My family have had a tough week and too much bad news, and I’m hurting. Self hate swamps me and I spiral into shame. Wrist poem today to remind me.
Be kind to your pain
Gentle with your craziness
Visconti Rembrandt, Robert Oster Tranquility.
I’m just going to lie here and try to remember that I am an okay person and all the pain and darkness in the world is not my fault and does not need to live within my skin. I’m just going to lie here and feel the tension of public life like a child trying to decide whether to tell the adults about the bad things happening, wondering what it costs me to be honest or to keep secrets, in my heart I’m walking the ocean alone by the sea grass and the pelican bones and I’m so flooded with ghosts I’m choking on them.
I’m just going to lie here and try to follow instructions, recall my successes and my skills, feel them in my body in my breath, in the bones of me, really feel them. I’m just going to try and stop the avalanche of self hate and darkness and failure that’s killing me that’s making so much noise I can’t hear the sound of my own tears falling or the breaking of my heart.
I’m just going to lie here and breathe and remember that I’m not alone and that my darkness is not even mine, it is ours, that I’ve borrowed it from one neighbor and it will pass from me onto another, that it climbs in the chest of all people on one night or another and turns us in violent panic against ourselves.
As I lie here I can feel myself moving in and out of anguish like the tide or waves of darkness or sex or rape. Self hate changes to deep sadness, to a howl of anguish that is somehow cleaner and deeper a wound but cut so far into the heart of me I can’t bear it and go back to self hate and the drums of war in my flesh.
Some days all my dreams are broken ships or wounded satellites, falling. I find myself walking a strange world dressed with lies I can’t believe and people who cannot love or speak the truth. My hands shed despair like skin or shadows and I remember that this is part of what it is to be alive, the anguish in the night and the sad wild cry of gulls and the body broken. I withe on my rack because we do not do pain in public in our world, we do not howl at graves or beat our breasts at funerals, we do not cry at work or scream at school or cut ourselves on campus or we’ll be escorted off and banned and no one minds terribly if you kill yourself as long as you don’t do it on public property or let your kids find you. It’s a strange and broken world and I’m just going to lie here. I’m just going to lie here.
Finding myself needing downtime, debriefing, and reflection space. So many conversations and experiences to digest. I recognise that lingering uneasy feeling of needing to stop taking in new experiences and find a safe place to slow everything down and unpack.
I find myself thinking of the unpaid and often hidden and unrecognized work of the precious friends, mentors, and loved ones who hold a space like this. I’m seeing how to use such blessings more wisely and waste less time circling the same dilemmas. It’s a rare gift, space in which feelings don’t have to be rational or justified to be explored. I have worked hard to get better at doing it myself for myself and for others, to support people to feel genuinely safe, heard, and understood.
I’m deeply grateful to Rose who has created this haven for me for years now, hours of conversations that at times seem pointless, confusing, frustrating. But that commitment to validation and reflection where I’ve been able to move out of personal journals and into relationship and conversation has been invaluable to me. Her love and skill and patience is a big part of why we work so well together. She is brilliant at listening, being safe for the vulnerable or traumatised, and remembering a my wildness and my darkness when I’m burned dry and can’t recall that I’m really a mad poet who has learned to mimic a regular person but I live, breathe, and recharge best out in the wilds, running along the edge of the night.
I’m so blessed to have some friends who also hold spaces for me, online or face to face. Their timely connection has been the difference between lonely anguish and comfort, severe distress and pain I can howl out of my heart. I’m aware of how lucky I am.
I’m struck once again by how many aspects of therapy that are healing and helpful are also aspects of life and relationship. They don’t have to be walled away as trained skills available only in treatment, by those in regulated relationships. They can and often are part of the very best friendships, they are part of the love that passes between partners, parents, children.
Eugene Gendlin recently passed away. I found his book on Focussing extremely interesting and helpful. I was intrigued that he didn’t take his ideas and lock them away in the exclusive domain of therapists, as is usual. Instead he considered focusing to be a skill any two people could learn and support each other in. Thousands of people have learned and offered this skill of holding space and listening to each other in support groups online and around the world. Precious, peer based. No power. No treatment. Connection. There’s nothing at all wrong with needing professional support. But I don’t like the locking of knowledge into silos, reserved for the experts and not recognised as the significant skill and profound kindness it is when we receive it in our personal lives.
Thank you all kindly, I really appreciate it. I am wrestling with exhaustion and having a lot of down days lately, where my energy is low and it feels like the world is a dark and scary place. It was really wonderful to wake up on my birthday and feel excited that on that day, my world would be a flood of friendly messages. Things didn’t quite go to plan and got really stressful in the middle with dismantling furniture and all kind of shenanigans and my Facebook app not letting me see or respond to half of the messages, which was bothering me because I hate responding to some people and not others in case someone feels hurt, but I couldn’t get a spare minute to get onto my computer… And it all got messy in my brain and I went and hid. There’s been a lot going on lately and my anxiety is high.
Rose, being brilliant and knowing me well, has set up a gift every day for a week and arranged a lunch tomorrow with my family. ❤ So I’ve had little gifts and warm messages coming in every day; a box of chai lattes, a lovely new journal. This weekend she’s arranged a camping trip so we can use my new birthday tent! Close friends are keeping me company online at times which helps when nothing feels safe and I need to debrief some of the stressors.
Today was the first day in long while I’ve been happy all day and it’s been wonderful. I had a good counseling appointment this morning which left me feeling hopeful and energised. I’ve enjoyed my family and my work, played board games, tacklef tricky things on my to do list, and felt excited about my life. Even a little bit loved and special. 🙂 How delightful!
So, thanks everyone who reached out. You’re awesome and I appreciate having you in my life, even on the days I’m struggling and can’t feel your goodwill or care of find any words to respond graciously. I fall into holes from time to time and I crawl out of them again. I’m glad you’re still here. x
So, I recently accepted the opportunity to speak on camera about mental health in the workplace for the SA Mental Health Commission. This is a big step for me! I’ve written before about the challenges of visibility for those of us who are multiple. I have moved from the written word, to public speaking, public blogging, radio, and now film. I am very proud of myself and very appreciative of the great people who worked with me on this project. Big shout-out to Tracey Hutt for awesome support during the filming, and the great film crew Mixed Mediums. 🙂 There was some back and forth discussion about whether it would be better for me to speak in person or on video about this. I’m very comfortable speaking in person for events, video is new territory for me. But I’m incredibly glad we went with the video – the event was today and I currently have laryngitis! Haha, fortuitous indeed!
I enjoyed this article which I came across on Twitter tonight. Wounded healer a qualification without ceremony
I’m ‘out’ broadly about things that make me different and ways I struggle. I certainly don’t judge others who are not, nor do I even recommend one choice over the other because at times the costs have been very high for me. We all live to our own values and all values extract a cost which we must willingly choose to bear. Values only sound pretty and wishy washy if you haven’t tried to live to them.
I do not believe any system of care for suffering people can be of real use until we genuinely understand that those employed in it are one of the most vulnerable high-risk groups. Until we make it safe for them to struggle, speak up, and need support we are doing harm. Some of our healers start out wounded, many more are wounded by trying to be healers in our destructive systems. In effect, we are wounding our healers and hoping that their silent suffering will somehow lead to the freedom and recovery of the identified patients.
This cannot work. A system in which half the people can only be wounded and the other half can only be competent is broken by design. All humans are both. Inhuman systems do harm. Either everyone is safe to be human, or no one is safe. Everyone can heal from their wounds, or no one really can.
One of the biggest challenges in working with the term ‘mental illness’ is how imprecise it is. Finding other terms and frames of reference is often important to me, because mental illness has so many problems. I’ve written before about my frustration with the way mental illnesses are conceptualised in a couple of posts:
Mental illness as an idea is rather like a huge drag net pulled by a fishing boat. It captures a lot more than it should, and it also misses some really important things that fall outside of the net. We use mental illness as a shorthand term for experiences and problems that are actually outside of the scope of the idea. One of these is suffering.
When we talk about preventing mental illness or reducing the incidence of it we are often talking about suffering. We want to reduce the horrific pain people are in, the suffering experienced by their friends and families who are struggling to understand and support them and find them help. The losses of relationships, careers, self esteem. But a great deal of the suffering that happens and needs addressing simply is not captured by the term ‘mental illness’ unless we stretch it so broadly that almost everyone qualifies as mentally ill. Grief is one example of this. The suffering caused by poverty and inequality which can present in ways that fit our categories of mental illnesses but also may not. Racism and discrimination which lock people out of opportunities, resources, connection, and self respect. Addictions. Abuse, bullying, domestic violence, rape culture. Loneliness, that subtle, pervasive, deadly experience buried beneath so many clinical terms for pain. Alienation, where those who are not invited to be part of the good life start setting fires to the lives of the fortunate. Destructive cultural ideas about happiness, optimism, the value of people, what it is to be ‘normal’, what success means, who the ‘nobodies’ are, what it means when bad things happen to us, and how we heal from pain and live meaningful lives. So much of this is critically important to discuss when we are talking about health of people and health of communities. There are threats, risks, and losses that go far outside the net of ‘mental illness’.
Mental illness also captures too much. Like a drag net that brings in fish as well as turtles, octopuses, and dolphins, there are valuable experiences and important aspects of what it is to be human that are currently tangled into the idea of mental illness. One of these is psychological injury where the mind is behaving exactly as it should under the circumstances. Nothing at all is wrong with the person, but they are distressed and need support. Needing support does not mean there is something wrong with you, this is how humans navigate loss, pain, and challenge. When you start to look at the symptoms of mental illnesses a question arises about whether we are describing the problem or instead capturing and focusing upon a healthy response to the problem. To put it another way, if a wound on my arm has clotted into a scab, my blood is doing its job. My blood is not the problem, the car crash I was just in is the problem. If I am suffering severe emotional pain in an abusive relationship, my mind is working the way it is supposed to and telling me that there is danger I should avoid, just the way it would if I put my hand on a hot stove. Feelings, even painful ones, serve important psychological purposes. The pain is meaningful and purposeful and represents a healthy mechanism, not a sick one. If we ‘cure’ people of emotional pain we make them psychological lepers. Leprosy does no harm to the general body by itself, but those who cannot feel pain struggle to protect themselves from the risks of life and without extra care small injuries cause severe harm. Many of us have seen psychological lepers – people who are not in pain exactly but who seem stripped of some vitality and oddly incapable of caring for themselves. Psychological leprosy is also called institutionalisation.
Mental illness often also captures diversity and eccentricity. There is a natural diversity to the human experience that includes a variety of thresholds for experiences such as psychosis. Under some conditions such as sensory deprivation, everyone will hallucinate. As a community we have a variety of thresholds for these conditions, meaning some people will hallucinate more readily than others. Often this experience causes no harm and in our culture people who experience hallucinations that do not distress or impair them usually keep them secret. There is a massive gap in all our knowledge bases about normal diversity because most of what we know about experiences like this come from people who are too overwhelmed to hide them. Everyone else stays underground.
Idiosyncrasy, that is, the absolutely unique aspect of each of us is a deeply important aspect of living a meaningful life. However it is also in tension with being part of a community in which shared language, beliefs, and ways of doing things are important. We are highly social, as a species, and also highly individual. Creativity and idiosyncrasy have a relationship we are still exploring in research. ‘Normal’ and ‘healthy’ are often defined in such narrow community focused ways that individuality and uniqueness wind up conceptualised as mental illness. The example of a psychologist in a grey pant suit diagnosing a flamboyant black queer man with Histrionic Personality Disorder is a classic example of this. One of my psychology textbooks had a photo of beautiful black man in makeup and fishnets as the illustration of this mental illness. People who fit the conventional culture better often see authentic but less conventional people through the lens of mental illness.
Not only does this lens distort what is normal and healthy about us, it often reframes our greatest strength as a weakness to be overcome. For many of us, the pathway out of the anguish of mental illness is not about becoming more normal (fitting the social norms better) but about becoming more idiosyncratic and then more wisely fitting the social norms we need to. It’s about tuning in to ourselves and learning how strange we really are. What we really need. It’s the reason I don’t tell other people that they should heal their mental illness through art, even though that has been essential for me. One size does not fit all. Only individual approaches genuinely connect with people’s needs. But approaches cannot be individual and people cannot even tune in to what their real needs are when the focus is about restoring ‘abnormal’ thoughts, feelings, and behaviours to ‘normal’. It is a skill, or at least a capacity, to not fit in. To retain individuality in the presence of a strong collective. We are socialised to navigate our community and there is a tension between the I and the We. When things go wrong in any number of ways, that tension can eat us alive. The push to navigate the We aspect better, to fit in and be less strange, can destroy the process actually needed to ‘recover’, in which being different and connecting to how we actually work is skipped for platitudes about reducing stress and the bland roll out of top ten ways to be less crazy and in less pain (have you tried a cup of tea or snapping a rubber band against your wrist?).
All of these ideas also shape our sense of what mental health means. When we think mental health means ‘not suffering’ we limit it to a badge worn by the privileged who have experienced few of the challenges of life and are now satisfied to take credit for their ‘good mental health’ as if it was a personal attribute rather than good fortune. When we think it means being happy we pathologise the suffering and obliterate the dignity of enduring challenge and loss. Pain is part of a healthy, rich, deeply lived life. Lives with tragedy and less privilege are bound up in navigating pain in ways that are difficult for those who have not shared these experiences to comprehend. Trying to eradicate all pain or teach people to be pain averse can destroy rather than develop mental health. Conceptualising pain as unhealthy sets people at war with their hearts and minds. And yet there is also needless suffering, and pain that absolutely demands a response from a compassionate society. Shame, fear, loneliness, self hate, and self destruction are all real. Some suffering must be navigated and for that we need support and self compassion and an appreciation that mental health can actually look like sobbing face down on the bathroom floor because that is a healthy response to circumstances. Some suffering demands alleviation. No child should be raped. Nobody should be treated as scum by services designed to filter out only the ‘deserving poor’ for resources. Some of us are going to hallucinate sometimes. Maybe we play music on our guitar on those days, or maybe we wind up chasing the idea that making the things that make us different go away will make our lives better. A lot of that is down to how we label it.
Rose, Poppy and I are all home from a big day out in very, very hot weather. We have turned on the air conditioner and collapsed on a mattress on the floor of the lounge room in our underwear, like a big pile of puppies. Rose is napping and Poppy is nursing and I’m checking Twitter and accepting new friend requests on Facebook.
Not a lot could have persuaded us to venture out in 42C, but today was something special. Rose let me sleep in until 15 minutes before we had to leave because I am fighting a sinus infection and was feeling so rubbish I cried when the alarm went off an hour earlier. Today was the first meeting of the Community Advisory Committee put together by the brand new SA Mental Health Commission. We were both successful applicants which is very exciting, and brought Poppy along as it was an all day event and she still won’t take milk from cups or bottles. I was anxious about that but it went incredibly smoothly. She’s such a social little baby and the folks there are so friendly. She had a wonderful day cuddling everyone and singing.
It was a special day. They’ve assembled an amazing group of people and I feel very honored to be included. My headspace was rough to begin with and I felt very small – boardroom type meetings are so very out of my culture still and my sense of failure is very attuned and intense at times. But I drew my distress (as I do) and my sense of dislocation calmed and as it eased I could see how I fit here and what I could bring to it.
So here we are, helping hold a space to make something new! Other brilliant, vulnerable people with their own communities and experiences of failure and success. People who have heard of pluralism and open dialogue approaches to communication and diversity! Doubt and vulnerability are also valuable to bring to such spaces. I am very excited and hopeful.
I did my first interview recently speaking out against the horrific stigma and discrimination so many people have to deal with as multiple. I’ve teamed up with SANE Australia to bust myths and show a human face to multiplicity. Yesterday they published the article: Nine things you need to know before watching Split. It’s beautifully concise and to the point, a much briefer explanation of the issues than this post. I’ve written here to elaborate on the key points and explain in more detail what is going on, why it matters, and what we can do about it.
This is crap. It’s lazy writing. It’s been done a million times. And always having the multiple be the bad guy harms people who are already afraid of the huge impact being out about multiplicity can have in their relationships, jobs, housing, education, and custody arrangements. Multiples are an incredibly diverse and highly discriminated against community, so why are we still telling the serial killer story? It’s not okay to constantly present us this way. How dare people make money by exploiting the vulnerable.
I’m multiple and I’m a compassionate, hard working, animal loving poet with a very silly sense of humour. I do not murder hitchhikers. I do not kidnap people. I do not terrorise children. I take injured seagulls to the vet. I provide a safe home for friends in trouble. I weed my elderly neighbour’s garden.
You do not need to be afraid of me switching. Switching is just like someone leaving a room and another person coming in. One of us catches the seagull and figures out how to keep it safe, we switch and someone else comforts the distressed child who saw the bird get hit by a car. We tag team our life. It’s actually completely lacking in drama. In my world multiplicity and switching is just normal.
Have multiples ever been killers? Yes. It’s rare but possible. Are some multiples violent or abusive or frightening? Of course. And so are some people who eat fish. Some Mexicans. Some psychiatrists. Multiples run the full gamut of human expression from demons to angels not because of our multiplicity but because we are human. Statistically, you are far more likely to be a threat to us than we are to you.
It’s just entertainment though, right? Don’t make a big deal of it. Don’t take it seriously. No one takes this stuff seriously. It’s not real. It doesn’t make any difference in the real world.
If ‘serial killer’ or ‘violent psychopath’ were the only roles we cast people with freckles in, how would you feel about dating a freckled person? Having a child with freckles? A co-worker? How would you feel about discovering you had freckles you didn’t know about?
I’ve watched a lot of the movies or episodes and read the books that depict multiplicity. Some of them I think are great, and that includes some that are brutal or in which the person with multiplicity is scary or the bad guy. (Strange Case of Dr Jekyll and Mr Hyde, Fight Club, Lord of the Rings)
As an artist myself I’m not wild about censorship. I’m not saying we should police our creative content and never allow a negative portrayal. What I am saying is that stories are powerful. Stories are part of culture. It’s far past time we started telling some different ones about multiplicity because the culture that surrounds multiplicity is deeply toxic and destructive. We are aware of this culture and the impact of stories enough that we should be responsible in how we tell the ‘negative’ ones.
Just in case Split was responsible, I’ve been holding off on sharing my reaction until I could read reviews and synopsis. I still had a small hope the famous Shyamalan twist might save it, or that perhaps there were cues in the film to distance this depiction from other people with multiplicity. There were not. It would take very little to do this either in the exposition (‘he’s fundamentally different from other people with DID’) or simply by briefly depicting a different person with multiplicity who is clearly not dangerous. Or even the hero for a change. I have a similar criticism of United States of Tara.
Because we so rarely see multiplicity depicted, every time we do that example is taken to be representative. People don’t come away thinking ‘that’s one example of a diverse experience’, they come away with a vague feeling ‘that’s what multiplicity is like’. This is true of all minority or hidden experiences – as a queer person if I’m the only one someone is friends with, who I am strongly shapes how they feel about all queer people. I’m very aware of this in my advocacy work around multiplicity and I always work hard to stop my own experiences being treated as representative. I see it as my responsibility to be honest and to bring the diversity of my community with me in all my work. A lot of my work is busting myths about multiplicity that are absolutes.
I’m particularly angry about Split because they have gone to a lot of effort to use current clinical terminology and mix a lot of real information and myths together in a way that makes it hard to figure out which is which unless you are knowledgeable about the experience. So the villain has been diagnosed with Dissociative Identity Disorder and is in therapy, real instances of major changes in function such as blindness between identities have been distorted to suggest this change is physical. The Facebook page for Split uses taglines such as “He’s not well“. I’m not personally impressed with the mental ‘illness’ framework for multiplicity or any other form of suffering or difference, but to see the language people use to try to explain their struggles co-opted to engender fear is disgusting. The people behind Split have done enough research to know better.
The website splitmoviehurts.com has a full run down of the movie (behind trigger warnings) and criticism from the perspectives of people with multiplicity, I highly recommend having a look.
The impact of these stories and issues is called culture. It’s ‘the water in which we swim’ – difficult to see or quantify, but ever present and extremely powerful. We keep telling the serial killer multiplicity story precisely because it is part of our culture and we recognise it. It has a pull. Each time we tell it we re-enforce the links between danger and multiplicity.
Multiplicity is surprisingly common but mostly kept hidden. Activists and advocates like me are certainly out making noise, but comparatively we are rare. There are a lot of reasons for this lack of advocacy and visibility. Culture is one of the powerful ones.
In all the time I have been working and living in this field, I have only just encountered my first instance of someone who is publicly out as being multiple being employed in a non-mental health setting. The culture is that negative, and acceptance is that rare.
Not something we tend to mention to mental health peer workers who out themselves as multiple.
The ‘multiples are dangerous’ stories feed the toxic triad of fear, fascination, and disbelief. These are extremely common reactions to multiplicity. They are profoundly dehumanising and destructive. They do us great harm both when we receive them from others and when we internalise them and express them towards ourselves and each other. These are the foundations of the toxic culture around multiplicity that causes so much harm.
The story of Split might not be real, but the fear definitely is. When I was diagnosed with DID in 2007 I was terrified of both other people’s reactions, and of myself. I was so afraid that no one would ever trust me again, that I would not be allowed to work with children or finish my psychology degree and support vulnerable people. I was also terrified of my other selves, afraid they might have totally different values from me and be outside of my control. Afraid I might not be safe. Afraid I might hurt someone. I had never seen or heard of multiplicity portrayed in a positive way, as a regular person, or as a moral, safe, and caring person. These are not the stories we are told. I felt bottomless fear that I might be dangerous and not even know it. On bad days I wondered if it would be better to kill myself than risk that possibility.
This terror made examining the possibility I was multiple a year long nightmare in therapy where I attempted to convince the psychologist I might have borderline personality disorder instead – because I perceived that the stigma about that was lesser. Anyone who knows the intense stigma surrounding BPD should shudder at that. This terror made accepting my multiplicity feel like leaping from a cliff into the unknown. It took courage and desperation and it made me feel alone and afraid for my life. It should not be this way and it doesn’t have to be. I did not know then that I had already been switching all my life and actually had a sense of who we were and our values. I did not know that the dynamic between us was like any group or family with its own values and personality. I didn’t know that a system could self regulate and change who was out if something bad was about to happen, or that some identities could override others for safety. I hadn’t yet read that violence is difficult to predict but one of the few useful indicators is past behaviour – which was good news for my system as we have never been the instigators of violence. I hadn’t yet got to know the rest of us and realised they are just like me.
Other people also expect us to be similar to the stories of multiplicity they have seen. I’ve had a psychiatrist tell me to switch in my first session with them to prove my multiplicity, and support workers tell me in disappointment they couldn’t tell I had switched. I’ve also had a PHaMs worker report they did not feel safe with me when I was open that they were meeting a different part that day – and I didn’t even switch in front of them. At the time this absolutely devastated me. To be considered unsafe touched profound fears in me. I cried like the world had ended. I never went back to the PHaMs program. I was heartbroken.
There’s an obsession with fakers and fraud, caused by the very limited ideas of what is ‘real multiplicity’ and the perceived gain available to those of us who are public – to be treated as rare and interesting. When I outed myself as having DID to the Disability Worker at Tafe she told me I was fascinating. I told her “those are just my problems. You haven’t seen my art yet”. This is not what I wanted to be known for.
People like me are accused of narcissism and attention seeking. We just want to be ‘special’. Perhaps to have money opportunities or fame- how often are people with plain old garden variety anxiety asked to go on Oprah or given book deals? What other experience is described as ‘the holy grail of psychiatry’? Are we building an insanity defence to get away with murder?
When basic resources and access needs are seen as favours or special treatment we are treated with deep suspicion. Competition for the limited roles of ‘real multiplicity’ is steep and harsh. Instead of supporting self awareness, compassion for uncertainty, and equality we struggle in a toxic environment that lavishes limited resources on a special few and withholds basic opportunities for support, employment, and dignity from everyone. If you can’t get a job then an Oprah presentation or a book deal are essential for income. We get stuck in the culture of sensationalism for the same reasons people with physical deformities used to join freak shows – because it’s the only role we are given and the only way to survive.
When I talk about fascination I don’t mean curiosity. Fascination has an ‘othering’ aspect where the subject is treated as less human. There’s a voyeuristic element to it. It’s intrusive, sensational, and hungry for the bizarre, tragic, or humiliating. Curiosity or interest are respectful and compassionate. Questions are only asked if invited, and from a basis of shared humanity. I love curiosity and I’m intensely curious about multiplicity myself. Fascination is repellent.
Sensational, creepy, dramatic portrayals of multiplicity also feeds the idea that multiplicity isn’t real. That it’s just a plot device used in Hollywood. So people like me are deluded or faking. There’s a lot of disbelief about multiplicity in the general community and the mental health sector. Ironically, I didn’t used to believe in it myself.
I turned myself into pretzel shapes trying to figure out if multiplicity was real or caused by doctors, if maybe I just wanted to be special, if I really was multiple, and if I should be afraid of myself. I doubted everything and examined my feelings and motivations ruthlessly. I was relentless and brutal in my attempt to be sure that I was considering this possibility for the ‘right’ reasons. At a point in my life when I felt so alone and so afraid, the toxic culture about multiplicity was making me treat myself with suspicion and disbelief instead of acceptance and self compassion. This was for me, life threatening. I might not have made it through the process of becoming aware I was multiple. It’s often a time of extreme vulnerability for people.
Films like Split also feed the idea that this is what multiplicity usually looks like: florid obvious switches between dramatically different identities who always change clothing and are completely separate and unrelated. For some people this is pretty accurate. But for most it’s far from our reality. Switches that are subtle, blurring or blending between parts with unclear divisions from each other and a lot of overlap in characteristics, even close friends only noticing what seem to be changes in mood rather than different identities – these are common experiences of multiplicity.
There’s an idea that multiplicity must be obvious to be real. There’s another one that it must be subtle and hidden to be real. Like most of these myths we are stuck whatever we do. Someone will try to take credibility from us.
What other process of diagnosis or identity develops this way? It’s incredibly common for people with multiplicity to doubt themselves and fear the diagnosis in ways I do not encounter anywhere else. It’s common for people to be terrified they are multiple and also terrified they are not. We did not create this culture. It is not our fault. But we inherit it and are pinned by the contradictions and trapped between the myths. We pay a steep price for it. Fear, denial, isolation, years of secrecy, torment and suffering. It costs us years, dreams, relationships, and consumes our energy and resources just to survive. Sometimes we pay with our lives.
That’s what I’m trying to be part of with my art, this blog, and my creation of the Dissociative Initiative. I work from values of diversity, acceptance, respect, safety, and dignity. These are the key changes we need:
We can do this together. We can support diversity, speak out against myths, and work to get stories of multiplicity where we don’t kill people out there. Change is possible when we treat each other with respect. We need to campaign for resources for those who are vulnerable and to care for and hold to account those who share the stories (creative or personal) and shape the culture. Things are changing and we are all part of that.
Sometimes I hate my advocacy work. I resent being out – or worse, having to come out over and over again. I count the costs and look back at my decision to be open about multiplicity back in 2010 and ask myself if I would do it again, knowing what I know now?
Some days the answer is no. It’s no through tears, through gritted teeth, through anger and a sense of betrayal at every opportunity once open to me that didn’t work out.
Becoming a Mum brings me into contact with a whole new world. I out myself as queer. I out myself as many things. But mental health? Difference, disability? Back in my first public talk about multiplicity, I sat behind a table to deliver it because I was trembling too much to stand. After a lot of thought, I came out on this blog in 2012 with my post I am not Sarah. How the hell can it actually get harder over time?
Because now I have so much to lose.
The most challenging delivery of my Psychosis without Destruction talk so far was one I did for a room full of GP’s while I was pregnant. I was so stuck leading up to it, so blocked trying to rework the talk into the much shorter time slot. Frustrated beyond belief that I was struggling so much, I finally realised that I was simply scared. Our culture is not always kind to mothers who are different. We judge, shame, and fear diversity in mothers. In the back of my mind was the fear that admitting to psychosis in a medical setting might end with being bundled into an ambulance and sectioned.
Multiplicity? It’s the kind of thing people can lose custody of their kids over, and I have a kid now. It’s a conversation I don’t want to have with new mum friends every time. Because drumming up the courage and the ability to set the tone as comfortable and normal instead of strange or frightening takes spoons I don’t always have. Some days I’m all out of brave. I can hide this so well, why not simply walk away from that part of my life and start to blend in for a change?
And then last night, I get a phone call from an old friend telling me they think they have child parts. And I say – congratulations. Parts can be the most wonderful thing in the world, the closest and most beautiful relationship. Congratulations on discovering this, on being ready to know. Do you want me to send you a welcome pack? Two – one for you, one for your counsellor. No worries. You got this.
I think who else are people going to call to hear that? Some days I love my advocacy work. I love that people know they can reach out to me. I love that less people feel totally alone and strange and freakish. I love meeting others and learning from them. I love hearing the stories and I cherish the diversity.
When people email me to say they are not sure if there’s a place in the world for them – how can my answer be oh maybe there is, but only if you are good enough at hiding it. How can that be the only hope for people like us? When they say to me I make them feel that maybe there is place in the world for someone like us… All the costs are worth it. They seem so small, even petty. Peoples lives are made better by honest sharing.
I have more to lose, sure. And I’ve paid a price anyway, steeper then I hoped to. But beware of greener grass. A life hidden, secret, and isolated extracts a cost also, sometimes more subtle and harder to count, but there all the same. I’ve been lucky. Look at my beautiful life, my wonderful partner, gorgeous children, my tribe of strange, beautiful, good hearted people. I have been so blessed. If I’m not strong enough to have these conversations, if I’m not willing to hold this space, the burden falls to those who can’t hide it. Those with systems that are struggling, those where the loneliness is killing them, where the pain is like a bloodstain on their shirt everyone tries not to stare at. If they are not the first multiple people have met, not the first contradiction of the serial killer trope, then I have helped ease a little of their burden. It’s not much, but sometimes it doesn’t take much to make a difference.
I have known so many multiples over the past few years. We are so diverse, and so normal. We have pets. We have rent to pay, careers we’re figuring out. We get sick, we care for others who get sick. We watch the news and worry about the world. We fight with our neighbours. We stream movies and eat ice cream and get behind on our laundry. We switch and get stuck or lose parts or battle with nightmares or have complicated relationships with our partners. We navigate disclosure in a million ways.
Visibility and activism are such a challenge for so many of us. Think about it this way – there are many gay/lesbian/bi activists because visibility and recognition are key needs – to have our identity, or relationships, and our children recognised as real and legitimate. We don’t want to hide, we want to be identified as gay/lesbian /bi etc. There are far fewer trans activists because most trans people do not want to be identified. We want to live out our lives safely and unobtrusivly. Being identified as trans for some of us is stressful – it may increase the likelihood of discrimination, cruelty, and violence. We want to be identified as our real gender, not necessarily as trans.
For multiples, most of us have learned that imitating non-multiples is the key to success and safety. Our systems are hard-wired for secrecy and hiddenness. Our systems may be vibrant and diverse inside but outside parts cannot be distinguished from each other and switches may be merely subtle shifts in mood or demeanour. For some of us we have learned bitterly that others realising we are multiple can bypass most of the protections it offers and make us deeply vulnerable.
The challenges with visibility go deeper though. As a child I recall watching myself switch in the mirror and having no words to express the way my face was suddenly no longer my own. It was terrifying. For awhile I was convinced I was possessed by the devil. I also developed a deep fear of mirrors. Being confronted with the other inhabitants of my mind and body was intensely disturbing. Imagine coming upon a stranger in your home, in your room, wearing your clothes, your deodorant, your grandmothers necklace. Imagine them wearing your face, using your hands, eating your dinner, kissing your partner.
It’s taken me years to be okay with mirrors. Being photographed. Being video recorded. Having my voice recorded. After diagnosis I had to avoid all of them. Mirrors and reflective surfaces would trigger switches. I could start to identify who was in photographs, I could hear different voices and speech patterns, identify switches between us. For someone who was terrified this wasn’t ‘real’ you might think this would be comforting evidence. It was simply terrifying, falling down a black hole where my identity and existence dissolved and nothing was certain. On bad days I would avoid all these things. On good days I might, when feeling strong, stand in the bathroom for a moment and stare at our face, watching the eyes flickering. Here we are. Slowly getting used to it. Exposure therapy. The unbearable fear becomes over time simply a daily reality. Here I am, brushing my teeth, switching. Mirrors hold no terror for me anymore.
I’ve been out since 2010 and we still don’t share individual names with anyone other than Rose. We don’t sign blog posts or artworks, we don’t identify photographs. We use our group identity as a shield and protect us all behind it. We are so open and so hidden at the same time. We are slowly coming to bear being recorded. Visibility of a different kind. It’s still very disturbing to see ourselves on video. Voice recordings are okay on good days when I have some brave left. I cope pretty well these days with having writing and art on display, and photos of us.
All of these used to be impossible. People would do things like tell me that a piece of writing didn’t sound like me, or that they really preferred one of my artwork types over another (and inside someone curls up in shame that their art isn’t good enough, inside the fear of being found out sounds like an alarm, the impulse suddenly reawakens to police who ‘Sarah’ is, who we present to the world, to try and curate our public self for an impression of consistency). People would tell me that they preferred my clothing style one day over another and we would freeze inside, as embarrassed as when a friend’s mother used to compare me with her daughter as we stood in front of her as kids.
Loathing the ‘specialness’ of the sensationalism – ‘the holy grail of psychiatry’, the media full of terror (even an old teacher of mine was once planning a book where the investigator gradually discovers he is the killer), and the dehumanising of talking about us as if we share nothing in common with other people. We are human. We are people.
The opposite impulse is also present for us. Walking up to the podium to talk about multiplicity at the World Hearing Voices Congress a couple of years ago, a 10 year old part offering to switch out and identify herself ‘so then they’ll see that switching and child parts aren’t scary’ while the wounded one vulnerable to self harm screams with terror at being so exposed. ‘Thankyou, my love, but no, please don’t. You would be wonderful but we mustn’t scare the others (inside).’
I’m not the only multiple being visible, of course. Being visible about something people want to hide means keeping a lot of people’s secrets. It means flying a flag so those who have fallen down the rabbit hole of self have a person to reach out to – even better if it’s someone safe, who will balance sympathy and optimism. Someone not embedded in ideas of multiplicity as a crippling disorder, but not gung-ho about pushing an agenda or assuming their path will be everyone’s path. That’s what I hope to be, what I try to be. A safe starting point in that journey of self discovery. There are a lot of us out there, mostly hidden in plain sight. It’s far from safe to be visibly multiple for many of us. But it’s so important that some of us are.
Figuring out what triggers your dissociation can be a time consuming process. There’s an inherent challenge in noticing the cue for an experience that by nature reduces your awareness. Anything can be a trigger, however subtle or obscure. There will be a story behind each one, a logic to it that makes sense once you put the pieces together, but when you are at the start of in the middle of that particular jig saw puzzle, often things seem random, unpredictable, and bizarre. People often feel totally defeated and crazy. It’s a huge challenge to believe that things will make more sense down the track, and to hold on to the possibility of recovery.
Something worth keeping in mind is that dissociation can be its own trigger. What first sets something off and what sustains it can be very different processes. Because dissociation is often a response to some kind of overwhelming stress – and because experiencing dissociation can be overwhelmingly stressful, it can be very easy to get caught in a loop where the dissociation triggers itself.
Not everyone experiences dissociation as stressful. For some people, dissociation is sweet relief from intense feelings or overwhelming pain. (see Understanding Emotional Flooding) It is the anaesthetic of life, the calm in the eye of the storm, the still peace of an animal doomed to die. For others, even massive dissociation comes with its own emotional disconnection that shields them from the impact of their experiences. People may describe amnesia, derealisation, or depersonalisation with a kind of numbness or indifference, as if they are telling a story that happened to someone else. However, not everyone gets this emotional buffering – or not all the time. For others of us, we are intensely aware of our dissociation, and fighting against it. We may feel as if we are behind glass, or underwater, or buried alive, or dreaming and unable to wake up, but the struggle to feel more real and connected is terrifying when it’s unsuccessful. Trapped in a psychological limbo with no way home we can become frantic and distraught.
When dissociation is our own personal fuse box, blowing out whenever the stress is too high, the stress of our dissociation can trigger more of it. The more distressed we are by it, the deeper it gets, and the more distressed we become. Fear can be a powerful trigger of dissociation, and experiences of dissociation can trigger intense fear and helplessness. Severe dissociation that we don’t understand, have never seen in others, have no language for, and can’t seem to make stop can be a very traumatic experience. When we better understand our experiences, learn a language for them, discover that they are normal, universal – not only to humans but to mammals, protective, and can be endured and worked with to resolve it – our fear diminishes. Our sense of powerlessness can ease when we understand that our brain is trying to protect us and is not the enemy. Our sense of loneliness and alienation can calm when we find that dissociation is extremely common but merely infrequently spoken about, a large if hidden aspect of the human experience. It is possible to learn more and fear less about dissociation, to be able to feel the triggers and foresee the disconnection without terror, to learn to lean into it and know that it is protective and will pass. It is possible to break the loop and allow the dissociation to become discrete episodes or at least a cycle that shifts between low and high levels at times of different stress.
Another aspect that can lock us into a dissociation loop is how we respond to it. Some people have a passive response to dissociation, sleepwalking through their lives. At the other end of the spectrum, people can become so distressed by and intolerant of it that they resort to extreme measures to break free of it. They may self harm, have compulsive sex, take needless risks, or abuse substances to try and feel something or reassure themselves they are alive. Traumatic replay can be part of this. Putting their mind or bodies into various forms of crisis can temporarily relieve dissociation by countering it with a burst of crisis mode in which we are energised, focused, and profoundly in the moment. However these crises can also be the stress that triggers more dissociation, entangling us in a loop that our efforts to escape only deepen.
It doesn’t have to be this way, and sometimes simply recoginsing this pattern can be enough to break it. It’s certainly something I’ve seen a lot in those of us who have become deeply and devastatingly dissociative, and it can sometimes explain the way that helpful dissociation has developed over time into the ‘pathological’ and distressing kind that takes away from our expereince of life rather than protects it. Other ways of working with dissociation that may be more helpful are
For more about dissociation, see my Dissociation Links.
I’m so happy.
On the other side of the grinding chronic pain, the sense of disconnection, the humiliating vulnerability, the crushing fear, the darkness that sucks me dry… is a strong, buoyant joy.
It’s not ‘keeping my head together’. It’s not employing strategies to manage my thoughts or feelings, or keep perspective, or look on the bright side, or support my own mental health in the ways we usually think of them.
It’s the aftermath of honesty, the raw pouring of heart into some receptacle – journal, compassionate ear, hole in the ground beneath a tree. We don’t have to claw our way up after unburdening the unspeakable weights, we simply float.
It’s the pushing back against all the stories I’ve been told, what I’ve been told I will feel and think and how this will unfold – and my growing bewilderment at trying to fit my experiences to powerful master narratives that partly match up and partly do not. It’s clearing some space to speak my own story and claim my own truths about my experience, finding in those tiny, personal details the richness of life, the personal and unique in a greater story of what it is to live and be human and try to bring a child into the world. There in those details is my life, is what makes my life my own among the experiences of billions of others. There is where my meaning is found.
It’s also the flying of a heart that’s been caged by chronic pain and found some relief. Yesterday my gum infection flared and set off bad pain my face. Combined with the exhaustion and pain of prelabour I was swamped. I have searched back for what used to help me during the bad years of severe fibro when I couldn’t walk or drive but was brain awake enough to need things to do so the restlessness, boredom, and relentless pain didn’t make me self destruct. One of these things was skilled work with my hands that required focus. I learned embroidery and needlework among other small, skilled crafts.
So I’ve taken up bead loom work again, and there in the quiet space of following my pattern and building my design, I find some peace. The building distress eases, the sense of guilt that I am failing to manage my pain, that I know better and should handle it better, the painful self consciousness that my shattered attention is increasing my perception of it, drowning me in it- all those are left behind and my mind becomes still as my hands create. It’s not even a tainted capital A ‘Art’ where I’ve been criticised too often and get swamped by insecurity and justifications for spending my time and money this way, it’s an untainted lower c ‘craft’. Stepping into it merely requires me to tolerate the scorn that it’s too traditionally feminine, that anything that isn’t ‘real art’ is a waste of my time, and that adjusting to impairment, disability, and pain will mean I never recover. That’s easier from a place of vulnerability. Capital A Art for me needs an altered space or a lot more self confidence.
Rose heats me a wheat pack and I sit by the heater beading, and for the first time in hours I don’t feel tortured. The rocking calms, my broken focus stills like scattered birds coming home, my hands thread and sew tiny beads. My breathing steadies.
That night I lay in the luxury of a hot bath with beautiful scented oil Rose bought for me, reading by the candlelight, and the trauma state washes out of me. I don’t feel small, helpless, broken, and afraid. I feel beautiful, loved, content, and at peace. We share a quiet evening together, watching DVDs, talking about our daughters. She does a breast pump, I eat soft fruit with the relish of the newly awakened – delighting in scent and flavour, senses alive. The night is soft and gentle around us. My joy is effusive and my mind feels clear.
My heart is full to overflowing. I’m so in love with my family, these beautiful women, my lovely home. Rose and I watch our littlest daughter rolling in my belly, powerful and vigorous. I’m excited to meet her, and I finally feel ready for her birth – ready to meet the challenges of it, ready to wait for it. I can endure the uncertainly and the transforming vulnerability of the in-between space of prelabour when I can so clearly see my little girl is okay. With that star to guide me, there’s time for wonder and even joy. The love in my heart bears fruit on the vine and bursts within me. Rose and I lay in the dark together and breathe each others air, skin warming to skin, dreams nesting beside us like cats.
I’m so happy.
I am doing a massive clean and sort of our home and belongings to make room for our little Frog who could come at any time now. Today I stumbled across this old artwork, made in about 2002 and exhibited at a psychiatric conference through my involvement in the Amigos program with Second Story. It pre-dates my diagnosis of DID by about 5 years, in fact I’d not even heard of the condition at this time. And yet to me it captures so well some of that lonely, fractured experience.
There’s a lot of new terms to learn when you’re engaging the wonderful world of multiplicity, because in some ways multiples function very differently. Some of these terms are clinical, which basically means invented by shrinks and doctors, and some have come into use through books and autobiographies written by multiples. One of the trickiest aspects of language is that it is not fixed – shades of meaning evolve over time. With a fairly ‘new’ lexicon like that around multiplicity, this is even more the case, and as admin of a large online group, I’m constantly surprised by the new terms or new meanings ascribed to terms I come across. Most people have a fairly idiosyncratic take on language and it’s often helpful to double check what they mean when they use a certain word. Having said that, there’s also value in having dictionaries of definitions to help us communicate with each other, particularly for those who are new to the topic and can feel bewildered by the terms being thrown around. For more common terms and discussion about language see Language, definitions, and common terms over at the DI.
Co-fronting or co-hosting refers to a process where more than one part is out, inhabiting the body at the same time. I’ve personally experienced this, the first time I was aware of it, it was a very strange moment. A sense of shared space slowly dawned on me, and with the awareness came a sense of something precariously balanced that would quickly collapse if I thought about it too much or had too strong a reaction to it. “I” was talking to someone who was struggling with a difficult situation. That tends to be my area, I have the counselling/listening skills and inclination. So the face, the voice, the mouth, the eye contact were all mine as I interacted with this person. However, we were also making dinner at the time. Someone else was doing that – moving hands to chop vegetables, borrowing eyes to read the recipe and use a knife and stove safely. We coexisted for about 20 minutes and then one of us went inside and the other took over completely. It was startling and surprisingly graceful.
I’ve had other experiences such as having an adult out while a distressed child takes over the hands to scratch at raw skin, or being able to soothe that child by asking Rose to gently stroke our hands.
There’s a similar term that means something a little different – co-consciousness. That refers to more than one part being aware of what’s going on in the body/the outside world at the same time. The opposite process of co-consciousness is amnesia, where only the part who is out is creating memories of what they are doing. Everyone else in a system may be sleeping/unconscious, talking with each other, or doing other things in an internal world. They may or may not be aware time is passing. They may be fighting for control of the body, but they are not sharing it. Awareness without any control of the body can be helpful or frankly traumatising, depending on the circumstances. For more about this see What is co-consciousness?
Systems vary widely in their experiences of multiplicity, something I can never seem to say enough. For some parts, when they are not ‘out’ in the body they may have no awareness, or total co-consciousness. Some systems have never experienced co-fronting, while others do it all the time. It can be as simple as one part running the body and cleaning the house and another part quickly reaching out with a hand to snatch to safety an item of value that would otherwise wind up in the trash. To some extent, we all do things with our bodies that are outside of our awareness at times – body language is full of examples of this where our feelings or impulses are expressed through escape movements, muscle tension, micro-expressions, and subtle cues we are frightened, aroused, bored, or resentful. Consciousness, identity, and awareness are all complicated and interesting aspects of the human experience, and it’s certainly not just multiples who have experiences outside of their perception of control and volition – although the scale of those experiences can be much more confronting and intense.
To discuss co-fronting we are also getting into the territory of how switching between parts works for various systems. For some, switching is instantaneous as blinking, while others take a long time. (for more about switching, see Rapid switching) Some don’t so much co-front with two separate selves as blend between selves in ‘switches’ that can take hours or days to resolve to a single part. Some systems experience ‘blending’ or ‘merging’ where two or more parts come together for periods of time and function in a unified way before separating out again. This can be highly productive or sometimes totally the reverse – periods of blending or temporary integration can be times of chaos, dysfunction, confusion, and exhaustion. (for more about this, see What’s the deal with integration?) I know people with multiplicity at both ends of that spectrum – some for whom they are never stronger and clearer than when their A Team has got together, and others who are foggy to the point of barely coherent and shut down for days when their system gets stuck with more than one part blended. For some systems both outcomes are possible at different times or under different circumstances.
The topic of co-fronting raises interesting questions about how parts relate to the body. The multiplicity lingo tends to be borrowed from the old ideas of a ‘brain/body’ split where there is a difference between existing in the mind and inhabiting the body. It gets very interesting when you start to wonder about things like – where do parts come from, and where do they go when they are not ‘out’? How is conscious awareness different from bodily awareness? What are parts, exactly? I’m fascinated by the way we explore these ideas so little in the literature and make such sweeping declarations about how this all works. The reason these questions are so difficult to answer is that we don’t have the answers for non-multiples either. We don’t know how consciousness works, how self awareness and identity interact. How a single sense of self is created from a multitude of brain processes occurring simultaneously. How memory, emotion, and perception overlap and impact decision making processes. We have theories and observations and big gaps in our knowledge base. Every year we learn more and more about our brains, and every new bit of information challenges an existing idea in some way. As nice as certainty can be, it’s not really how science and knowledge work. In the meantime however, finding language to describe experiences and exploring how we are all similar and different is a powerful aspect of learning, connecting, growing, and living deeply.
If you’re a South Australian local and interested in mental health, this Friday April 29th is a free/gold coin donation film screening you’ll probably be interested in. All the details in the Hearing Voices Network of SA newsletter here.
First newsletter out in almost a year… Haven’t done one for the DI for the same amount of time. I miss my networks. I wish I could get paid for running them, and wish I had my little team of three to bounce ideas around with… as I’m getting back on my feet and having to pay for domain names being annually renewed and suchlike I’m starting to think more about what to do next and how to support these. Friends came over last night for the most wonderful campfire evening and it was so lovely… and made me miss being able to hang out with my local hearing voices group around a campfire without all the politics and crap about who is allowed to be friends with who… I deserve to be paid for my work, and I have the right to identify as I truly am and be friends with people from whichever category I wish.
I don’t know what the way forwards is yet, but I’m starting to be able to think about it again without being overwhelmed by a sense of failure, anger, pain and loss. Maybe that’s what the Waiting for You exhibition has done for me – given me a sense of having a place somewhere in the world. Maybe I was never meant to live in the world of mental health the way I was trying to build my career. Maybe there’s a home for me in art and a way to do this work that doesn’t exhaust and exploit me or force me to compromise my values. Maybe…
I don’t know. Nothing has worked so far. But I’m learning, through each loss and each dashed dream. I’m trying different approaches. I’ll unlock that door and crack it open a tiny bit, and back away quietly. Maybe some idea will come to me about how to grow these precious networks. Or maybe I’ll find some other, more sustainable way to make a difference in the world.
Here’s a fun paradox: as I’ve explored in this first post about criticism fatigue, as a mental health service provider and peer worker, criticism is risky to me, my job, and my organisation. It makes me feel stressed, threatened, and unsafe, and at times it is all of those things especially when it crosses the line into abuse. However, I feel quite the reverse about being able to make complaints. It’s very important to me that my right to criticise is respected and supported. I want to be able to make a complaint easily, without penalty, and to feel listened to, taken seriously, and even see change happen as a result. Being able to criticise limits the power of people and services to abuse and harm me – as a consumer, a carer, or a peer worker. Being able to criticise helps me be safer. But receiving criticism threatens that safety and wears me out. How do we manage that reality?
If I believe that consumers deserve to have a voice, which I do, then I believe that criticism must be part of the process of service provision. If I believe that staff deserve to be safe from abuses by consumers or other staff, which I do, then I believe that criticism must be part of service delivery. If criticism is so essential, maybe we need a better approach to it in services – something that makes it less threatening and less risky.
Let’s look at the bigger picture for a moment. Criticism can be conceptualised as a form of ‘feedback’. Feedback is the process of sending a message back after an action, to modify the next action. It’s a form of communication, and it is incredibly important to the functioning of all organisms, eco systems, and structures made up of smaller components. This is moving into the territory of systems theory, a fascinating field of study that explores the relationships between individuals/units/components within a larger system. The nature of feedback is that it creates regulation – it gives information about the effect of an action so that future actions can be modified to achieve the desired result. Without feedback, there is no regulation, and without regulation, function and survival are threatened.
In relationships between people, feedback is essential to connect and to pursue goals. Feedback in the many complex forms of signalling contentment, distress, praise, criticism, and so on all set the boundaries and define the power balance in the relationship. 2 way feedback means that these signals can be sent and received by both parties in both directions – person A can tell person B when they are comfortable or irritated or hurt, and person B can do likewise with person A.
In systems where this feedback is inhibited there are higher risks of problems. If a consumer can’t complain to or about a staff member, they are less likely to be consistently engaged with in ways that meet their needs and don’t hurt or frustrate them. If a staff member must not have complaints made about them/their services then they are under pressure to meet consumer needs without being able to clarify when their efforts are not effective, and without being able to take risks that may not work out – bearing unfair responsibility that presumes mind-reading and infallibility. If a staff member can’t complain about a consumer but the consumer can complain about the staff member – or vice versa, there is a significant power imbalance at play that can allow harm to happen to the more vulnerable party.
Criticism is also essential in a less personal sense – we need to criticise services, resources, ideas, ideologies, approaches, politics. In a similar way that feedback regulates relationships, it regulates ideas. It is not possible to create anything that is perfect, static, unchanging. The most elegant and beautiful idea can be misconstrued, misapplied, inappropriate in context, overcomplicated, oversimplified, accidentally destructive, and deliberately twisted to cause harm. It is not only appropriate but essential that we debate, discuss, and explore our ideas. In the case of services we need to hear from all people. It’s not good enough to say – well ‘most’ people find this approach helpful so we don’t have to listen to those who find it harmful. It’s not good enough to assume that good intentions will prevent harm. It’s not good enough to create highly risk averse structures to prevent criticism and then take the lack of criticism as a sign that all is well.
Criticism is part of learning. It is a signal that we have made a mistake, and propels us to greater understanding. As Bradbury colourfully put it in Fahrenheit 451
You’re afraid of making mistakes. Don’t be. Mistakes can be profited by. Man, when I was young I shoved my ignorance in people’s faces. They beat me with sticks. By the time I was forty my blunt instrument had been honed to a fine cutting point for me. If you hide your ignorance, no one will hit you and you’ll never learn.
Criticism is also inevitable. Do anything at all in life and you will have critics. Some you need for their useful ideas and input, and some are just the price you pay for being active. Criticism can help to expose you to ideas, experiences, and perspectives you could simply never personally gather in your own lifetime. My experience of setting up resources in mental health and doing consultation to garner what is most needed, where the gaps are, and the best use of resources has been that getting that information in advance is often very difficult from more than a small portion of the community. However, once a resource is running, criticism will abound if it fails in some way – and the resource can then be modified in the light of that. It’s often difficult for people to articulate what they need until they’ve started to see some options (show me a menu! I don’t know what to order) or started to have some experiences (this bit was great, that bit made me really uncomfortable). It would be a whole lot more comfortable for me if I could gather that information in advance and set up ‘perfect’ resources, but that’s more about my fear of criticism than it is about the back and forth of real community engagement. Accepting and being willing to engage with criticism has worn me out and led me to struggle with criticism fatigue, but it has also honed my ideas, challenged my ignorance, and made my resources better.
Criticism is also inevitable because of the massive diversity in people’s needs, values, and beliefs. It is simply impossible to perform any public action that meets with 100% approval. Some people are adept at criticising from their armchairs without ever risking getting involved. Some feel threatened by anything that brings an unpleasant reality to their attention, or that reduces their own power or comfort in any way. A local organisation had to fight an extensive court battle to open a respite facility for people with mental health problems when many members of the local community tried to block it on grounds such as their perceived risk of violence from the members, and possible lowering of house prices in the area. Most community services aimed at vulnerable, stigmatised populations face similar challenges with harsh criticism. Anyone who works in retail or any customer service role with the public has stories of people’s bizarre, confronting, irrational, and impossible expectations, opinions, and behaviour. The comments section on internet videos and articles is often testament to exactly how ugly ‘the public’ can be. People are highly diverse, not always rational, and not always community minded. Criticism can reflect human diversity, and it can be a weapon of human perversity and cruelty.
So, if criticism is risky, but also essential and inevitable – how the hell can I engage with it? The approaches we are inclined to when experiencing criticism fatigue are so harmful and create many more problems than they solve. Increasing control, reducing transparency, filtering access, giving up, hating ourselves, refusing to listen, and attacking back all deflect, avoid, and weaponise criticism. What are we left with? What does it look like when we engage with criticism as a healthy and essential part of communication? How can we recognise our own limits and vulnerabilities around criticism fatigue? How can we support ourselves to engage criticism in constructive ways? I am no expert for sure, but I have been lucky enough to have some good mentors and read some interesting books in this area which has helped a bit as I’ve fumbled my way through peer work. Something to explore in my next post.
Part 1. Criticism is Risky
Criticism fatigue (a term I’ve appropriated from the idea of compassion fatigue) is one of my vulnerabilities. As a peer worker I’m partly a ‘service user’ and partly a ‘service provider’. I have to deal with criticism in both roles, but the latter role brings special challenges that I’d never expected or considered before I took it on. Criticism fatigue is where I feel overloaded and want to respond to criticism in ways that are destructive. I might attack back a person I feel is attacking me, or feel so discouraged that I withdraw and stop doing what I’m trying to do or close the resources I’m offering. I might look for support among my peers in ways that re-enforce an ‘us and them’ dynamic, tightening our ranks or even having others step in to harass or rally against the person criticising. I might turn on myself with self-loathing. I might simply turn off my hearing and stop listening to ‘the haters’, taking in only feedback which is encouraging and positive. All of these ways of responding are risky and destructive. They contribute to worker burn-out, ‘class wars’ between different groups in the mental health sector (volunteers vs paid staff, management vs front line staff, consumers vs service providers etc etc), and the slow, gradual restructuring of services to reduce the incidence of complaints through a variety of ways that significantly decrease the value and increase the likelihood of harm created by the service. The risks of risk averse services have been well documented and elaborated upon by people such as Mary O’Hagan.
A number of things make me at higher risk for criticism fatigue. One is the idea that the service that has the fewest complaints is the one that is running best. This is a bit counter-intuitive, so bear with me. It seems so obvious that if you are choosing between two say, mental health support groups to fund, and you learn that Group A has about 30 formal and 60 informal complaints in a year, and Group B has 2 formal and 4 informal complaints in a year, then it seems pretty clear that Group B is by far the better run, more useful and safe service. And that might be true! But sometimes the stats are misleading.
Group B may have shaped its service to prevent engagement with those most likely to struggle with authority, structure, and diversity – some of the most challenging areas of group engagement. It refuses to allow people with diagnoses such as BPD into the group. It limits membership to those with strict ideological similarities. It places significant obstacles to join that preference long term service users who are familiar with the nature of such resources and tend to be more institutionalised – ie. highly medicated, passive, compliant. (eg. setting is socially degrading – attending meetings via collection in a van with the words ‘mentally ill’ on the side, needing permission or referral from carers or treating doctors to join the group, the group is only advertised in highly restrictive environments such as inpatient units etc)
Group B is run in a highly authoritarian or charismatic manner so members self-select rapidly and those who are not comfortable with this style of leadership leave or are asked to leave. There are elements of Stockholm syndrome or trauma bonding within the group, with an emphasis on how fortunate the group members are to be involved and how grateful they should be. Group B has a complaints process that is intimidating, difficult to find or access, or penalises the complainant. (eg one local homelessness service had a two strikes and you’re out on your ear policy, and explained to any consumers who wished to make a complaint that a staff members word would always be taken over theirs because staff were so valuable and difficult to secure, while consumers were desperate for a place – so any complaint they might make would automatically result in a black mark against them) Group B maintains its superb record through a kind of subterfuge, not by offering a better service but by being selective about the membership and making the complaints process fraught.
There’s a context of course, which is that Group B has been created in a culture of funding instability, high levels of criticism and conflict about what resources are needed, how they should be run, and where money should be spent, and the belief that staff are experts who can make people’s lives better rather than mediators who help people access resources. Media is another part of the context – negative media attention can be unexpected, unfair, and highly destructive. Criticism can cost people their reputation, their jobs, their funding, even entire organisations can die on the back of it – sometimes totally unfairly.
Other things increase my risk for criticism fatigue too. Most service providers are trained staff who have been educated with ideas that make them vulnerable to creating resources like Group B – firstly that high levels of regulation and restriction are ‘natural’ and best practice for ‘vulnerable populations’, second that recovery or assistance is about putting the needy people in contact with the ‘experts’ who’s job it is to improve their lot in life in some way, third that complaints mean you are doing something wrong (or that the person making the complaint is wrong) and that the least complaints possible is the best outcome. So staff are cast in a parental role of responsibility that is inclined to over-control, infantilise, institutionalise, take too much responsibility for outcomes, and have a frightened and defensive response to criticism. The more I take responsibility for things I can’t possibly control, like someone else’s recovery or experiences, the more I try to be perfect and infallible, and the more I try to control things I simply can’t control the higher risk I am for criticism fatigue.
Peer workers come from a different background, may or may not be trained, and use their personal life and history in their work in ways that are often very different to other staff. There’s an extra history around criticism, at least for me, that impacts my vulnerability. As a ‘consumer’ or ‘carer’ I did and do plenty of criticising of the mental health system, and so I should. As the most powerless and impacted people within that system I deserve to have a voice and speak out about abuses of power, poor practices that are doing people harm, and advocate for better. I’ve very rarely experienced having criticism received well. Despite considerable effort to criticise in constructive, non-threatening ways, using the language of the people I’m trying to speak to, making sure there is significant acknowledgement of successes and efforts to do well, almost all of my experiences of making a complaint have been futile or even destructive to me in some way. This is a history that compounds, making it less likely that I will criticise in the future, and less likely that when I do, I will do so in a respectful, unbiased, appropriate way – because I carry all the previous experiences with me and they radically impact my emotions, clarity, confidence, and expectations of success.
As a consumer, I’m also very accustomed to being criticised, fairly constantly, sometimes in quite subtle ways and sometimes very overt. As a consumer I face comments from staff such as being ‘too low functioning’ for a service, ‘too combative’ when I stand up for myself, ‘not committed enough to recovery’ when I’m struggling, ‘not compliant’ when I disagree, and so on. Much of this kind of criticism dis-empowers and belittles me in some way: makes me doubt myself, costs me credibility, and makes it harder for me to see myself and be seen by others as an equal adult who has a right to an opinion about my care.
As a carer my experiences of criticism were more randomly intense and contradictory, I found that I would often be criticised for being over-involved and under-involved with the ‘sick person’, by the same staff member, within the same conversation! Frustrated staff vented in ways that made no sense, and as a carer I was either totally ignored, or a convenient person to dump those frustrations on.
When I transitioned into peer work (or consumer consulting, or volunteering, and so on) I recall vividly each of the first times I was myself criticised for my ‘services’. Going from passionate consumer to a service provision role, I was naive. On some vague level I hadn’t thought through very much, I thought that my fire for good services, my willingness to listen, and my strong sense of identification as one of the ‘sick people’ not one of the ‘experts’ would all mean that I wouldn’t be criticised because I wouldn’t do anything that anyone would be upset about. Clearly, I hadn’t worked a lot in retail or with the public at that stage! I would use my power and my role to empower and be an advocate for fellow consumers who would be appreciative and thrive. Looking back, I sounded exactly like the most optimistic of any new staff member in the mental health/disability/community services sector, and I was in for the same disillusionment process.
Criticism when it came from other consumers was a huge shock. At times it was delivered in the most distressing ways. I was told I embodied words that cut deep, totally contrary to all my values and hopes, things that stayed with me and resonated inside me, playing over and over in my mind at night. Insensitive, dangerous, thoughtless, patronising.
Sometimes more aggressive. Bitch. Stupid. Fat. Psychopathic. Sadist. C*nt.
Often coming out of left field – from totally unexpected situations and people. Taking me completely by surprise. Having totally misread a person or situation, or having someone keep their feeling very hidden until a big blow-up.
Sometimes without any basis whatsoever – coming from delusions or psychosis that I’ve somehow been linked into without any involvement on my part.
Sometimes specific to my experiences, borne out of and riding on cultural stigma and fear about my identity – eg. as a same-sex-attracted woman, or someone who can experience memory loss when stressed.
Mostly coming with assumptions that I had intended to hurt or even harm, that I was deliberately doing so, totally aware of it and even revelling in it. That I simply didn’t care and deserved to be punished for my indifference, or harmed in return to ‘wake me up’ to what I was doing.
Sometimes then, criticism coming over and over again from the same person, so that each interaction with them was harder to force myself into because I now knew that at some point it was coming. Feeling trapped in a relationship with someone who clearly hates things about me and what I do, or is transferring a stack of unfinished business onto me. As the service provider not feeling free to leave them the way they were to leave me. Feeling myself walking on eggshells and doomed to fail.
Sometimes physically scared. Having to call security, standing up to someone enraged and a lot bigger than I am. Encountering rage, contempt, revulsion, dehumanising, and total indifference to my own needs and vulnerabilities.
Sometimes not being seen as sincere even when I desperately was. Having a heartfelt apology rejected. Finding that there seemed to be nothing I could do to help the other person see that I was human too, had not intended to hurt them, and was trying to reconcile.
Sometimes not being given the chance to reconcile. Criticism followed by cut-off where I could not address misunderstandings or respond to accusations.
Sometimes being esteemed too greatly by hurting people for a little while could see only my strengths and the good, comfortable aspects of the resources I was involved in. When my feet of clay became visible, experiencing the dramatic flip to being totally devalued and despised. Learning to be as cautious of compliments as I was of criticism because they sometimes had a close relationship.
Sometimes losing my consumer status with other consumers. Feeling rejected by ‘my people’ who no longer saw me as ‘one of them’.
Finding that taking on any authority role at all meant that I picked up the tab for how everyone in authority had previously treated this person. Being tarred with the brush of those who came before me. Finding myself tempted by all the responses I had so hated in others –
Criticism fatigue puts me at risk of behaving in highly abusive or destructive ways.
As a peer worker, I was stunned by how something that would have felt monumental to me as a consumer felt so incidental to me as a worker. It was incredibly challenging to pay attention to this. I felt like I was walking back and forth between two windows, looking at totally different perspectives of the same view – through the consumer window it was a mountain, and through the worker window it was a molehill. I began to understand the distortions that come with having any kind of power – how difficult it is to give credibility to the perspective of the person who doesn’t have it.
Where having power over others was almost invisible to me while being highly visible to them, I was exquisitely attuned to those in power over me, and how little I had in the context of the hierarchy above me. Hyper-awareness of my own vulnerability and sense of powerlessness went hand in hand with a new blindness to the vulnerability of those in my ‘care’.
As I flinched from these experiences and started to struggle with criticism fatigue, an opposite process also kicked into gear – compassionate consumers who needed to make a criticism of some kind became afraid of hurting me and self censored. Dehumanised and lashed on the one hand, and caught in silenced and distorted relationships on the other, it was easy to see how quickly my world could polarise into my detractors and my supporters, those who savaged me, and those who never questioned me. Caught within that framework I would be set up for increasing cognitive distortions and corruption of my goals and values.
Criticism from above was also different as a peer worker, and often centred around being too like consumers, and needing to show that I was ‘one of them’ a real staff member. (even if an unpaid volunteer with almost none of the benefits of being a staff member) Criticism often dovetailed. For example, a complaint from a consumer in a resource I was running would often need to be dealt with at the same time as triggering a review process from those in authority over me who needed an explanation. This could be very stressful for a number of reasons, my own issues with authority figures and massive anxiety about these kinds of conversations, huge ideological gulfs between my approaches to criticism and those of the team leader/supervisor/manager wanting the problem resolved quickly, and often an adversarial approach to challenging situations – time pressed and overloaded management unable or unwilling to explore the complexities of situations and finding myself with two options only – either I am right, or the complainant is right. In those situations if I want my job or I want my resources to keep running, I had better make sure that at the end of that 20 minute review my boss thinks I am right.
So I’ve found myself tap-dancing, trying to show that I haven’t done something horribly wrong where I should be reprimanded, that my resource is valuable to many and shouldn’t be closed, and at the same time trying to advocate for a consumer who is making complaints about me – because unbeknown to them they are being branded a ‘serial complainer’ and the organisation is considering banning them from all resources on the basis that they are wasting a lot of time and tying up resources that could be better used on other, easier to deal with people. Where I’m trying to show that a compassionate and engaged response to a person in terrible pain with a horrible history of having power over them abused IS one of the functions of a good resource and organisation, not a waste of time. Trying to operate with integrity under these conditions has been extremely straining.
As a service provider, I also get criticism from those outside of my resources. I once had a psychiatrist at a social gathering tell me they would be forbidding any of their clients from accessing my resources because they believed that they, and I, were dangerous. I’ve had this blog listed as an example of a dangerous and ignorant person perpetuating the myth that DID exists. Yesterday I received an email telling me I am eyesore on the face of the multiplicity community, that my approach is harmful and gross and hurting people with DID, and that it’s clear I don’t care. It would be easy for me to immediately conclude that I have spectacularly failed my aim of safely resourcing people in need and should shut down what I’m doing, but actually this is quite normal in mental health. (that doesn’t mean I get to ignore it either – but to take it on uncritically is also naive) One psychiatrist rails against the inpatient unit of another psychiatrist. Whole committees argue intensely about the definitions of disorders and what counts as real. Working for a little while in the eating disorders sector was like jumping into a shark tank of furious hostility about what defines an eating disorder and which approach was best. People’s lives, futures, families, incomes, professional reputations, jobs, and funding are at stake. It’s an intense arena for criticism, which is often lobbed like bombs across enemy lines. It’s easy to feel under attack from all quarters.
And people think peer workers burn out because we’re juggling a job and a mental health problem!
Criticism can of course be warranted and useful and even experienced as helpful! I’m using the term broadly here, encompassing complaints, corrections, and even abuse. Their unifying feature is how uncomfortable they can be and the way we are likely to perceive all of them, on some level, as a threat. We work hard in our lives to prevent, avoid, or protect ourselves from threats. Experiencing criticism as a threat is, to my mind, the highest risk for me to move into criticism fatigue. And the difficulty is, this is not always an inaccurate perception – some forms of criticism, and criticism in some contexts is a threat – abusive, costly, and unfair. All these experiences also accumulate and inform our response to criticism which tends over time to become more avoidant, defensive, or aggressive. Even gentle, respectful, and totally warranted criticism can easily be highly threatening, because it challenges my perception of myself (and others perceptions of me) as a good person and my resources as valuable and helpful.
So, this is the context and these are the risks. When I wake up to hostile Facebook messages or group turmoil and I simply want to lash out or run away, how else can I approach criticism? What reduces my risk of criticism fatigue? For me, the first step has been to explore what criticism is and go beyond my sense of being under threat. Which is a topic for my next post: Criticism fatigue part 2: Criticism is essential
I had a meltdown in the small hours of this morning. I woke around 4am and spent a long time trying to get back to sleep and ease my growing nausea without success. At about half past 5 I woke up Rose. She shut the door as I crashed into vomiting and hysterical crying I simply couldn’t stop.She rubbed my back while I sobbed and apologised because I wanted so much to not be experiencing that and could not stop it, and because I’d filled in a stack of mental health assessments the morning before and the questions designed to measure my levels of self compassion and mindfulness were making it harder for me to have self compassion about my intense pain.
Today, sick and fragile I’ve watched the world from my couch and felt myself shifting into a dark, heartsick place where I need something I can’t name yet. Restless, I can hear the wind in the trees out in the night and it calls to me in a language I don’t speak but do recognise. Better to sail my hurting body out into the dark and answer the call than to stay cocooned and feeling a poison seep into my heart.
Snatches of poems call to me. The coming upon the end of my strength. That some things are untrue even in the darkest places. (The Bad Fathers) I hunt them down and read them with tears on my cheeks and I can’t tell you why these poems or what I’m crying about.
I’m not here, but I don’t know where I am instead. I’m not me, but I have no name or place except the night and the wind. Stepping sideways into a shadowed place, there’s a memory of hysteria but no voice cries here. There’s a silence under everything, under all the sounds I hear, and beneath even that is a yearning.
As the dawn broke this morning I hunched over vomit and sobbed. My self cracked and pain broke through like a storm. I could no more stop it than stop a waterfall. My mind was thorny with the sharp and broken ideas beneath simple questions on paper. I washed upon them naked and they cut into me. “How often do you feel anxious and scared for no good reason?” Never, I whispered defiantly, never. There have always been reasons and all them are good, even if I can’t see them or name them, even if you can’t see them or don’t think they’re important. All their words, so seemingly harmless and well intended, make it so much harder to be human. The act of observation changes what is observed, it sets a fire in my bones. You cannot measure me with impartiality and likert scales that assume I am mentally ill because I am in pain, that I am defective in some way in a world that is just and safe, that pain is madness and madness is without meaning. You cannot measure my capacity to be disengaged from my own anguish and compassionate towards my woundedness without leaving a stain of shame upon my vulnerability. This is what it is. I vomit your beliefs in the night and my love strokes my back.
Here in the night again, waiting for my body to knit back together I find I’d still rather be a poet than believe that pain is sickness. So much of your ‘health’ is simply good fortune. The obsession with control and disconnection are your sickness, not mine. I can break into a thousand pieces and the night after still be moved by the wind in the trees. I am not numb, and I can walk in other worlds. Pain is not the key, but it is part of the price. With one eye I look into the sun and with the other, into the night. (you will not take me, you will not make me your own)
There was no unkindness, on the contrary, I spent a long morning with the kindest and warmest professional I’ve met in a long time. She stoked the fires of my hopes for credentials, income, employment. Told me with delight that the late Michael White, a brilliant narrative therapist who’s work I greatly admire, would have loved me. Opened all the doors I was closing with grief and fed all the starving hopes. I was near manic with excitement all day. There’s something I don’t yet understand beneath all my pain about work. I can’t see it clearly or find a name for it. It has twisted my passion into an unbearably intense pain and self hate that are triggered both by hopelessness and, more cruelly, by hope. These are the thorns that prick my spirit. I scrape over every moment that triggers shame, every opportunity I missed, every time I’ve frozen up, trying to figure out if it’s me or the world. Did I self-sabotage? Was there something I missed? Passed up? Should I have tried harder, fought longer, believed more deeply, needed less. Been less poor, less sick, less wounded, less alone. Would this then have all worked out and I could be the properly ‘recovered’ person I’ve been trying to so hard to be, and wear the armour no one can see that stops you taking the kind of hits you throw up the next morning? I’ve tasted employment and credibility and having an income and it is so much better than this. I may still be alone and naked in front of the crowd but I can afford a robe to put on when I get off the stage. And it’s also no better at all, the aftermath of passion and exposure can still strip me raw and strand me in a place without comfort.
Maybe success would cost me something I can’t see. While I’m here, wrestling with snakes in the pit, I find others reach soft hands to me, likewise scarred. Me too, they say, me too. I know this grief and hollowness, the sense of non-self, non-identity, outside of history and the great people, outside even of the ledgers of those who bind self to job. I know the death by a thousands cuts of your world, each cut a space on a form after “employment?”, a pause in the conversation after asking what I do.
My child still lives within me, what more fortune can I ask for than that? If fortune is a well from which we draw, who’s portion would I take? Here, with the other broken people I find a kind of gentleness, like the quiet generosity of the very poor. You, I am not ashamed of, sisters. Their world is not our world, and I don’t know that I’ll ever be able to wear fine clothes without feeling like a child dressing up. My limitations and my aspirations collide and I am the one that falls.
Ah well. The moon is high and beautiful tonight. The house is quiet. A life deeply lived cannot be without risk or without pain. Pain is not all there is here.
We made it! We’re starting to believe we might all be okay and to look to the future and make longer term plans.
I keep trying to blog but frankly I’ve been so sick I haven’t been been able to put together a coherent post. I’ve had a few windows of feeling better which I’ve put to good use by catching up on 6 months of business admin, various bits of housework, and baking my Mum a birthday cake. Mood wise I cope with a day or two pretty well but by the end of day 3 of feeling horrible, Rose tends to take a very teary person to bed.
As far as we know, everything is going brilliantly with the pregnancy. We’re hoping like crazy that the second trimester might start to be a bit easier on me, currently I’m still losing weight and struggling to eat. We have another ultrasound later this week which is nerve wracking and exciting. Hopefully this time we’ll get to hear a heart beat.
I had a brilliant day today, after a rough morning Rose took me to meet a friend of hers who works as a doula (a pregnancy and birth support person) and we had a great conversation. Funnily enough we found parallels between her work in changing experiences of childbirth, and my work in changing experiences of psychosis which was really inspiring and gave us something of a common language. It was exciting. We also share some experiences around health problems and chronic pain, which is brilliant for me because I’ve struggled to find other people who are going through pregnancy and parenthood from these backgrounds and who can understand some of my particular concerns.
I am so excited to be pregnant, but I also have a tangled relationship with pain, hospitals, working with medical people, being given intimate exams by strangers, being told not to worry, being called a good girl by patronising people who are wearing all their clothes when you aren’t, and many other common aspects of pregnancy and labour. I have past bad experiences of not being taken seriously, of being misdiagnosed, of suffering from intense pain that wasn’t believed, or wasn’t able to be medicated, or was thought to be psychosomatic. I feel very anxious and out of my depth facing labour at times, and my usual approach to feeling this way is to do some research. I’m keen to find safe places and people to dig into this territory with and start to find my own path. As much as possible I want to feel skilled, competent, resourced, and informed. I’m scared and I don’t expect to stop feeling scared, but I don’t want that fear to run the show or limit my choices.
This isn’t the pregnancy and experience I might have had if things had gone according to my original ‘plan’ and I was starting a family much healthier and younger. It’s also not the same experience I had being pregnant with Tam. I find myself grieving for those at times, and struggling to figure out how to turn my longer, more complex history into a resource rather than the mixed bag of hopes and triggers I’m currently dealing with. I want to untangle things enough that I can begin to see the possibility of good outcomes as clearly as the bad ones – most nights I still have nightmares where the baby dies. A friend gifted us their cot and I’ve been frozen with distress at the prospect of an empty cot in the house. I cope okay with the clothes and toys and carriers and so on, but the thought of facing another loss and coming home to an empty cot is simply unbearable to me. Rose took over thankfully, and it’s been dismantled and packed away into the shed.
There’s a fair trauma history here like scar tissue all over my heart. I most hate the feeling that pregnancy is a kind of ‘winner takes all’ situation, that at the end of all this bravery and misery all is made right if we are given a live baby, and all is shown to be hopeless folly if we face death again. I’m trying to find some way to make my choices and our journey meaningful, whatever the outcome. Isn’t that always the way, with life? The challenge for all of us?
So today it was exciting to feel like I’m finding what I need! The services of a doula are sometimes seen as a kind of luxury, but right now for our family this feels like exactly what we need – support that is informed, non-judgemental, and open to the grief and trauma Rose and I are carrying as well as the joy and opportunities we might otherwise miss. And it was exciting to talk shop with someone who was interested in my ideas and experiences too. When I’m a bit better I’m looking forward to doing more writing and giving talks again, and a little work is trickling in again which is making my heart sing. I wish I could be a doula too, but for people in mental health crisis, to help them deal with a first psychosis or navigate being diagnosed with DID, or a severe dissociative episode. That would be brilliant.
I thought I was doing someone a favour this morning but I think it backfired. It turns out that nervous student on first day of placement + very hot weather + morning sickness is a recipe for vomiting, nearly fainting, and somewhat traumatising all involved. There was a lot of fluster. Sensible instructions like “don’t just feel for the vein and then get the needle and poke it in, you have to feel again and make sure the needle will be in the right spot!” were emphasised by a slightly harassed supervisor. I nearly had the opportunity to drink the special extra fun sugar water from the fridge when it was confused with the regular cool water. And I’ve been sternly instructed that however well I feel I’m supposed to lie down for tests in the future because pinning green/white pregnant ladies to the chair is hard on blood techs. I’m not sure why they don’t have sick bags handy considering how many people go woozy with blood tests – and repeat missing the vein tests especially, but fortunately those bags they send off the vials in are handy and don’t leak. Fortunately for me I’ve been doing extra work on my needle phobia in acupuncture sessions.
I’m hanging in there. Froggie is the size of a ladybug. I’m getting a lot of nausea and food cravings and aversions. Rice crackers and fruit are my friends. I wish I felt a whole lot more excited and happy but mostly what I feel is massively vulnerable, and relief that I’ve still got a stack of symptoms that reassure me I’m still pregnant. I’m doing my childcare cert 3 and applying for other jobs, and sleeping on the couch in front of the air conditioner. Rose sorted out my resume for an application last night because I was wrecked and fell asleep – it was so lovely of her and felt like old times with her helping me try and get something for work sorted out. Week by week I’m gradually getting better, but I’ve been a long way down and my energy and confidence have taken huge hits. I find it hard to share about, partly because I’m still figuring out what happened, and partly because it’s easy to swamp me with shame and guilt while I’m still so rough. The days go by very slowly, it’s taking a very long time to reach 8 weeks and our first all important scan. Just breathing. Just hoping.
Please may our baby live. Please may life make sense to me again. Please may I find my place in the world.
Believe it or not, I’m now in a baseball league! I spent this morning running around a pitch with Rose and a couple of friends, practicing fielding and batting. I never thought this would be something I enjoy, but I had a fantastic time! Turns out the experience of sports is completely different if you’re not in high school anymore. 😉 I started to support Rose who was keen to play and also because exercise can play a huge role in improving mood and mental health. While I’m out there I’m so focused on what I’m learning there’s no room for anxiety.
Running around a field in the sunshine with my mates slowly improving my abysmal skills in throwing, catching with a mitt using my left hand – honestly, I’m bad enough with my right and using a mitt feels to me like trying to grab the ball with a waffle iron – and actually hitting the ball from time to time with a thin but of tarted up pipe… well it was awesome. The coaches don’t mind that I’m an unfit total beginner who had never even watched a game of baseball and needed every bit of lingo explained, and the feeling of catching the ball or knocking it across the field was great!
Afterwards we all had lunch and lay around with ice packs. I’ve got a pretty nice bruise from catching balls on my left hand, and some even prettier ones on my arms and chest from not quite catching a few. Unlike fibro pain, which is diffuse, bone deep, and makes me feel sick and exhausted, this is quite manageable. War wounds. I’m kinda proud. Tomorrow may be interesting but I’m planning gentle walks and hot baths.
Being part of a team, learning new skills, running around but enough stop-start for me to catch my breath, and coaches giving great advice at every step… It’s the polar opposite experience of trying to run a small business as a sole trader where there’s no guide, I have to be instantly amazing at everything, and if I’m not sure about something I’d better fake it and hope no one notices. It felt like falling backwards into a big cloud of marshmallow by comparison. Friends! Encouragement! Advice! No one to beat but myself. I think I really like sport. 🙂
The rest of today was blissful laziness watching movies and in a rare fit of American culinary appreciation, having BBQ ribs for dinner. What a great day. I am so pleased. I’ve had a real turn around this week, I’m still often pretty paralysed, but I’m having half days and whole days where I feel like myself again and life is good. I’m coming back.
Today, I called the SANDS helpline and spoke to a lovely woman. I so needed to hear that the mess I’m in is ‘normal’. It makes sense. Other people who have been here get it, in all the horrible intensity. Trying to get pregnant again after we’ve lost Tam has bowled me over. I had no idea how hard I would find it. After the devastation of losing Tam, on top of the terrible string of losses Rose has endured, by mid year things felt so right and ready. We had a donor again, I had some fantastic opportunities for my business, Rose was working…
I remember that when we first started trying to conceive, I was haunted by a death sense that took me by surprise. Trying again after loss has magnified that to proportions I can hardly fathom. When Rose crashed into severe PTSD and couldn’t work, and my own business hopes were dashed, I went into meltdown. I fought and struggled and tried to find a way through. In the end I’ve had to accept that I can’t stop it happening and just accept it and be patient.
Some days I shift my sense of accomplishment to things like – well today I’m not in hospital. I’m not costing the taxpayer money for a psychiatric bed. (which would be find if I needed it, of course, but hooray that I’m not) I don’t have a string of medicos giving me conflicting advice. I get to choose my own reading materials from the library and I have control of the remote for the tv. Plus, I’ve showered, dressed, hung out with friends, and have all my pets around.
This week has been a lot better. I’ve had a number of good days, and the bad days have reduced me to ‘useless’ but been nowhere near the intensity of 8 hour crying jags or 6 hour panic attacks. I actually felt well enough to call a helpline today – I know that sounds oxymoronic, but it’s really risky for me to reach out when I’m not okay at all, because there’s an even chance of not getting help and then I’m in terrible trouble. Today I could risk it and it helped a lot.
It feels like my life has stopped. Every cycle we aren’t pregnant feels almost like we’ve lost another baby. I’ve never cared a whoot about my own ageing, but I fell apart in the shower the other night suddenly noticing changes to my skin. I’m plagued by nightmares about my friends and family dying. Sometimes when we’re not pregnant I’m heartbroken and relieved in equal measure because at least that’s a baby I won’t miscarry. I can’t breathe properly, all the time. Remember that nightmare ten days between our ‘it doesn’t look good’ scan and the ‘they have died’ scan with Tamlorn? Like my life is on pause. Just trying to catch my breath, all the time, every day. A scream inside that never draws breath. Trying to force myself to be reconciled to something that everything in me simply cannot accept.
I feel crazy. I’ve been vaguely aware of ‘baby mad’ people from outside and never expected to be one myself. I want to be able to have a life while we try to get pregnant, and that feels impossible at the moment. I can’t fathom how that’s the case, but but right now my reality is that most days taking care of myself – eating, drinking, coaxing myself to sleep, staying in touch with my people, and so on, is all I have in me. I can’t tell you how frustrating, humiliating, bewildering, and scary that has been! It is so incredibly hard to maintain any kind of perspective and it’s unbearably vulnerable.
It’s unbearably painful to keep trying, and it would be unbearably painful to stop trying. I chose this and I felt ready and I thought we could ride the roller-coaster and walk into whatever came without regrets but now – I feel trapped. I can’t breathe. I can’t make it happen. I’m out to sea and helpless. We might get pregnant and we might not. We might carry to term and we might not. All the assurances people give us (it’ll happen when it’s time, when you’re ready, when the universe or God decides it’s right etc etc ad nauseam) belong to another world, an illusionary place where there is justice and fairness and a grand plan and some kind of certainty. I don’t live there! I’ve read the stories and talked to the people and I can tell you for absolutely sure that fertility is not fair and there is no certainty. If I knew we would never bring home a live baby I would stop right now and throw no more of my life away on this impossible dream. No more days just trying to breathe, talking myself gently through every hour, every minute. On the other hand, if I knew we were going to conceive this month and carry to term… nothing in the world could stop me. But I don’t know, and I feel powerless. How to live without regret in the face of such unknowns?
I am so frightened. I’m scared that I’ll never feel better, that I’ll have post natal depression, that I’ll be an awful parent, that we’ll never have a child, that all our friends will leave us, that we’ll have another miscarriage, or a stillbirth, or a baby who dies at 2. I’m scared that I’ll lose my mental health, my family, my tribe, my capacity to work, my lovely partner. What am I willing to give up for this? What if it doesn’t work?
Strangely, just being able to ask these questions helps so much. It gives shape and form to pain and darkness. If I can name it, understand it, share it, it’s not so overwhelming. I spoke to a stranger on the phone today and told her how agonising it has been to watch my beloved Rose suffer through PTSD. Night after night of screaming pain, to be holding her hand when she can’t even feel me there. And somewhere in all my rambling I said the thing I haven’t been able to say even to myself – Rose has loved so deeply and lost so many babies, I am afraid that if we never bring home a little one of our own, her heart will be broken beyond repair and I will lose her. I type that with tears running and my face aching with a scream I can’t sound. She hurts so much and I can’t bear it or take it away.
I don’t know how I found myself here, feeling so stuck, feeling that all my world pivots on a single dream I have so little control over. I can’t go forwards, I can’t go back. I can’t breathe. I’m ashamed and embarrassed and confused. I am good at reconciling myself to terrifying things! I’ve supported people I love through suicide attempts, I’ve built a life from homelessness and isolation, I’ve escaped communities in which I was dying and I’ve been able to grieve my losses without going back. I am good at this!
But oh, watching my love in pain. Oh, oh, my heart. Like an addicted gambler, where the stakes are everything I have done with my life until now – each month I roll the dice and hope. I can’t bring the stakes down, can’t end the game, can’t breathe.
Yes, said the woman on the helpline. It makes us feel crazy. It sends us into breakdowns. It isolates us.
Writhing like a worm on a hook. Silent because too many people already think I won’t be a good parent, or that I’ll regret it, or that I’m not up to it. Silent and frightened and embarrassed as my sense of the world falls to pieces and I’m in the biggest free fall through the deepest black pit.
I didn’t have any idea just how hard the last few months were going to be. I wanted to be able to handle them so much better! I’ve tried very, very hard to do so. And I’ve done a lot even in this distraught place that I’m proud of. I’ve helped my love find the support she needs, held her hand and cheered her on as she’s moved into an incredibly fast recovery and return to work. I’ve supported my sister through a tough time. I’ve not leaned too hard on any one person, but I have asked for help and been honest about how not okay I am. And I’m still here, still with Rose, in our lovely home, caring for our pets, gardening, looking after myself, hanging out with friends. I might have flunked college and given up on my business and not been able to write or paint and have no idea what I’m going to do for work – but I’m still here. My life has not burned down around me. I’ve read a lot of books. I’ve even joined a baseball team, just last night, with Rose and a couple of friends. I still have my life and I’m starting to come out of the deep darkness. I was lucky enough to have the opportunity to hear a beautiful talk about supporting trans men at a local pregnancy service a couple of days ago and my heart was so buoyed by it – I love work like this so much! I can’t wait to be well enough to get back to it. Our stunning garden blooms outside my window and it feels like a metaphor on a day like today. All that hard work months and years ago, and today when I have done nothing – not even got dressed, I just sit here and watch it bloom. The effort pays off and carries me through the times I can’t do anything. I rest and it carries me through. I rest and it carries me. For that I’m thankful.
Two full good days in a row… Today was bumpier and harder work but still good. Tonight I’m driving Rose and myself home from a family get together, musing on what this might mean and why – being ‘alternative’ seems to have unlocked something vital in me, being alive at night, ignoring the ‘normal’ world… And we drive into the largest blackout I think I’ve ever been in! The streets are eerie without streetlights and I nurse us through dark intersections with my hazard lights on and creep to the roadside out of the way of emergency vehicles. Everywhere people are roaming out of their houses to see what’s going on and the night has a strange, wild, lawless feel to it.
Back home we settle our animals and find matches and candles. We don’t want to open our fridge so we go to bed with a supper of chips and water. Blackouts were always a special time as a kid, my folks would haul out the camp stove and cook up dinner or hot chocolate or popcorn and we’d sit around candles and play cards or have a book read to us. I treasure these times when ordinary life is disrupted in a small way, like lightning storms or summer rain, they are invitations to step outside of routines and experience something different.
They can be a time between, a place between worlds. This is the kind of place I can live in, breathe in, make art in, make love in, hear my own voice in. In the darkness I’m feeling my way along, finding these strange illuminating moments of clarity, moments when the veil lifts and the pain falls away. I don’t understand it but one day I will, and until then I’ll keep going.
I’m just coming to the twelfth hour of feeling like myself again today, and it was blissful. For the past two nights I’ve gone back to sleep after waking early and distressed, and both nights I’ve dreamed for the first time in many months – that’s got to be a good sign! I woke this morning feeling rough and did good things anyway – gamed with my sister and had a hot cinnamon donut for breakfast. I can’t tell you how ridiculous and frustrating it is to be trapped inside a nervous system gone haywire, literally trembling and rocking with distress while doing something I really enjoy… That’s been my world lately, hours and hours of endless distress despite everything being well. But at about noon it switched off as suddenly and without tangible cause as it comes on, and the whole rest of today has been simply glorious.
Rose and I spent the day with friends, we had fun at a ball range practicing our baseball skills, had a picnic, watched movies, ate ice cream, played games, and had a great time. I am so relieved, it’s the most wonderful thing in the world just to feel like myself.
I feel so incredibly fortunate to have friends and family who are comfortable inviting me around and still including me despite the high chance of panic attacks and chronic distress at the moment. I feel so lucky and loved. I’m having to cancel a lot of things I want to do at the moment and I’m so grateful for people who get it and know that I’m not hiding behind anxiety as an excuse to get out of things, that if I say I wanted to come I really did want to be there.
The most terrifying thing about feeling this awful and out of control is my terror that maybe this is ‘me’ now, maybe this is what the rest of my life will be like. Today what helped was deciding that even if that was the case, I was still going to be part of life, to do my best to live a decent life; to be present, to care about people, to limp along as best I can however messed up and broken I feel. This thing that’s got me by the throat and is scaring me out of my mind is not going to win. I’ll fight every step of the way. How wonderful to be rewarded with so many hours in which breathing happened easily and without thought. Please let it happen again, often, please.
I had a very dark night last week, unable to calm down intense distress for many hours and terribly afraid for myself. I would use all my skills to settle and even get myself to the point where I fell asleep, only to wake a few minutes later in panic again. I was able to get an emergency appointment with my psychologist and went along – for the first time in my life – in a state of hysteria. She’s diagnosed me with exhaustion, and helped me get a quick appointment with my gp for meds to calm down the intensity of my distress. I’ve now got a script from my gp for anti anxiety meds, however they are not pregnancy safe so they are a last resort.
How can this year have done such harm to me, I asked the psychologist – I’ve had much worse years! You’re thinking in terms of trauma, she said, look at all the loss and grief of this year instead. They are significant. Stop everything and do whatever you need to to rest.
So here I am. Most days have two distinct aspects to them, one in which I’m genuinely fine, even productive, cleaning and cooking and hanging out with friends. The other in which I feel like I’ve fallen off the planet. I can’t catch my breath, all of life feels without meaning or purpose, and I’m tormented by fears and existential questions that strip me to the bone.
I found this lovely series of artworks that resonated with me: Superman Falling (actually titled ‘No. Superhero’ by Ole Marius Joergensen). There’s something so terribly human about this place, this state, a kind of cultural heritage none of us would choose to have. Nobody wants to be quite this human. I certainly don’t, although sometimes I think I catch a glimpse of something beautiful in it all. At times I’m saturated by death, surrounded by the void. I feel very humiliated by it, frustrated, angry, scared.
Sometimes it feels like a punishment for big dreams, for reaching too far above my circumstances, for thinking I had answers or anything to offer other people. How the so called mighty do fall. And how people like me are supposed to conceal such terribly human frailty, such weakness. I am healer, supposed to be above such vulnerability. I also find myself feeling very alive at times, which is jarring in contrast, but refreshing too. Better feeling alive then dead, than numb then dead.
I’m not getting enough sleep, I wake early every night in a rough place and have to find ways to calm down and stop thinking about death and people who have died. I take great comfort from Rose sleeping beside me, and I bring my friends to mind and tell myself I’m loved. I read books by my little book light in bed, or when the anxiety nausea is bad I get up and slowly pace until my gut un knots. Sometimes I lie on the couch so my tossing won’t wake Rose and I pat a cat, focusing on the feel of her velvet fur, trying to be present. I stop myself calling people I love to check they’re still alive or tell them how much I love them which I’m sure would get very old at 3am.
If I still can’t settle I call Lifeline and tell them I need to hear a friendly voice. Sometimes if it’s dark I stand naked out the back and feel the night on my skin. My heart seems absolutely broken and overwhelmingly afraid and I talk to it soothingly over and over, trying to bring it back from a place of despair and terror. Distract, be present, plan. Don’t think about death. Plan the following day, plan dinner, wonder how friends are going, sit and look at our astonishingly beautiful front garden full of roses and poppies and marvel at the abundance. It will pass, it will pass, it will pass.
Today has been long! I made it into college not feeling good and spent the whole day calming myself down. I’d try to talk to my tutor and start gasping and crying. I tried sitting in the sun, reading, pacing slowly around the building, sipping water, a hot cuppa, a lot of gentle self talk, a phone call to Rose, food, changing all the words I was using about the task I was supposed to be doing, sitting with the very nice friends in my class, looking at other people’s work for inspiration, and all it helped a bit. But the moment I tried to do any work my headspace just crumpled into a big pile of trembling, breathless, unhappiness. So after 6 hours of gentle coaxing I gave up and came home. I’m currently hiding in bed, hanging onto the funny side of being someone who can and has coped with some truly terrible life situations and crises, being unable to make a print at art school – that most luxurious of pursuits that many people would give their right arm to have the opportunity to do! It’s like coping with dragons and being undone by a moth phobia. O.o
It will get better.