Hearing Voices Links and Information

If you’re looking for support around the experience of hearing voices, here are all the resources and links I’m aware of. Firstly a few from this blog:

The International Voice Hearing Community has a website at www.intervoiceonline.org and a facebook group for anyone to join to share and discuss experiences at www.facebook.com/groups/intervoice This is open to people who hear voices as well as friends and family looking for information and support.

For children and young people who hear voices, Voice Collective is UK based and found at www.voicecollective.co.uk they have a number of free resources including this online booklet: For Parents Carers and Family Members of Young People who Hear Voices or See Visions.

Here’s a list of Australian based organisations and groups:

Here in South Australia, we have currently one group meeting every week, called Sound Minds. Details on the Mental Illness Fellowship of SA website here: www.mifa.org.au/voice-hearers-group This is run by Ben and Anna, you can ask to speak with them on (08) 8378 4100. If you experience your voices as parts, there’s a group called Bridges running weekly you may wish to contact. That’s run through the Dissociative Initiative who can be found here: dissociativeinitiative.wordpress.com. There’s also a number of books on voice hearing in the DI library which you can borrow free if you live in SA.

There are many other Voice Hearing Activists who themselves hear or have heard voices and now work in Mental Health sharing their experiences and resources, a couple are listed here:

If you’re in a crisis situation, please reach out for help. In Australia you can call 000 for a life threatening situation, or ACIS on 13 14 65 for mental health crisis, or to speak with someone urgently Lifeline www.lifeline.org.au are available on 13 11 14. These are all available 24/7 and although they’re not specific for voice hearing if you or someone else is in danger they are the fastest support available. If you’re struggling to get support from ACIS, I would suggest reading

If you’re still struggling to find something local or you’d like to talk with me about your situation, you’re welcome to send me an email to sarah@di.org.au, but please be aware I’m extremely busy and may take a week or more to get back to you. Best wishes and take care x

Is Schizophrenia having ‘Multiple Personalities’?

The short answer here is no. Multiple personalities (now called Dissociative Identity Disorder, or DID in the DSM) is classified as a type of dissociative disorder, while schizophrenia is a type of psychotic disorder. Very shorthand descriptions of these types of conditions are:

  • dissociation involves a disconnection of some kind, in this case between parts of identity
  • psychosis involves an addition of some kind – hallucinations, delusions etc.

From the perspective of the DSM they are entirely separate and distinct, with fundamentally different processes involved and treatments. There are certainly huge differences between many of the experiences.

Popular culture often mixes them up, which tends to enormously irritate people with either diagnosis. I have some degree of sympathy for the confusion however, because even the concept of what schizophrenia, or for that matter, multiple personalities, actually is changes quite regularly and I get that folks outside of psychiatry aren’t getting the memo and keeping up.

The longer answer is still no, with some qualifiers.

Schizophrenia roughly translates to split mind. This does not traditionally refer to the idea of split personalities, but instead to divided mental process or a split from reality. Schizophrenia is a fairly poorly defined cluster of symptoms that has changed significantly over the years and since the previous term ‘dementia praecox’. ‘Multiple personalities’ has also been understood in various different ways over the years – as an experience of spiritual possession, a subtype of schizophrenia where the person is in fact suffering from the delusion that they have other personalities, and so on.

Where things get really tricky, even with the current rigidly defined separation between these two conditions, is in the overlap of presentation or experience. And there are a lot of them. Firstly, Schneiderian First-Rank Symptoms, which were once thought to be extremely diagnostic of schizophrenia (and involve experiences such as thought insertion, thought withdrawal, and voices heard arguing) have been shown in some studies to be far more indicative of DID. What this means is that telling the two conditions apart on the basis of observing a person, or even learning what kinds of experiences they are having can be very difficult.

 

Secondly, psychosis and dissociation often seem to co-occur in my personal experience. Many people with a psychotic condition find that massive dissociation is part of the prodromal (or onset) phase, just prior to a major break. Some people with a dissociative condition, like myself, experience psychotic symptoms such as hallucinations. PTSD is an excellent example of this. Technically classified as an anxiety disorder, people diagnosed with it commonly experience both significant dissociative and psychotic symptoms.

Thirdly the whole area of voices, which I think is what really confuses things in popular culture. The DSM perspective is that voices are hallucinations, while alters are split off parts of personality. The fact that some people who have DID can hear their alters as voices blurs the two categories. Having some people experience their voices as stable personalities who perceive themselves as separate but alive, likewise. There is a considerable space here where people from both diagnostic categories meet. For more on this overlap, see Parts vs Voices. For a lovely description of working with voices as parts, see Creating a New Voice by Indigo Daya.

For some people, the diagnostic labels are very useful and important. It can be a great relief to have a name for distressing or confusing experiences, and I’m not in any way trying to take that away. These frameworks have their uses. But they also have limitations, and when you move beyond the boiled down Psych 101 spin, life is more complex than these discrete packages of symptoms can really capture.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Building social support

Some of us find ourselves in a place where we are deeply isolated in our lives. This is sadly a common problem for many people with ongoing mental health problems. Social support is one of the factors that help to build our resilience – our ability to handle difficulties. Isolation has been a major problem for me most of my life, and in my opinion certainly contributed in a big way to the mental health problems I was suffering as a young child. There are many different things that can contribute to becoming isolated, which can change the kind of approach you may find most effective in overcoming it. In my case, some of the things behind my isolation were very simple ones – such as being a creative arty person in a small school with a strong sports focus. Others were compounding issues such as developing PTSD in my teens and finding my peer group weren’t able to support me – their withdrawal distinctly increased my symptoms and distress which only made me more different and awkward and therefore more isolated. This kind of spiral – the experience of mental illness and/or trauma makes you behave differently and need different things, which can lead to your social support withdrawing, which can make the illness and distress worse – is a common one for many people. In addition, withdrawal from social contact is a pretty common symptom in many mental illnesses, so your social network can fall apart or move on while you’re hunkered down in a burrow somewhere. When you start to feel better and look around, it’s a bit like Rip Van Winkle coming home to find the whole world changed and his children grown. But too, for a lot of us isolation is part of the landscape in which vulnerability to trauma and mental illness is then grown.

I’ve rebuilt my life on more than occasion only to have it all burn again, and I’ve learned a few things from mistakes I’ve made over the years. Maybe some of these will be helpful to you.

  1. Sometimes you have to leave. I could bend myself into pretzel shapes trying to make friends at school, but really what I needed is to look elsewhere. There’s a few reasons for this – one of which is that having been targeted by bullies, even students who liked me were afraid of also being bullied if they spent time with me. But that’s another story! It would have been better for me to have been home-schooled and looked for mates in after school drama classes and activities like that.
  2. Borrowing the social network of a friend or romantic interest. It’s nice to be invited out and have people to hang around with. But if things go pear shaped you’ll be left picking yourself up on your own. Some of the energy you’ve invested into those relationships could have been spent making mates of your own.
  3. Putting up with very unequal relationships. It can get tempting to take what you can get and accept some miserable relationships when it seems that nothing else is on offer. I don’t mean never care about anyone else, or don’t be kind to your elderly stroppy neighbour. I mean taking on someone and treating them like your best friend when that’s really not what they are. Confiding personal information that is later used for gossip, nursing them through heartbreak when they never show on your bad days, always paying for the night out when they could afford to shout it now and then.
  4. Expecting more of your mates than they’ve got. When I was a teenager dealing with PTSD my mates at the time freaked out and distanced themselves. That was really painful and unhelpful, but I do get that a bunch of 15 year olds really weren’t equipped or supported to know how to relate to me. They had no idea why I was so reactive and overloaded, and frankly if I’d been given good support from other adults they might have had a model to emulate. Most of us don’t have friends who are deeply educated and experienced in mental health and trauma sensitivity. They are going to get it wrong. (frankly, even if they have loads of information and experience they will still get it wrong! That’s just the nature of being human I’m afraid) I use a lovely quote by Barbara Kingsolver as my own guide:

The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away

We all need contact with other people to maintain mental health. There may be different quantities for different people – some of us need more social contact than others. We also need a range of different kinds of relationships in our lives, from the barest acquaintances to the closest of kindred spirits. Sometimes we may be better at maintaining one kind of relationship than others. Some of us have a couple of really close mates but almost no one else in our lives. It doesn’t matter how awesome the friend is, you still need other layers in your life. Others of us maintain a healthy bunch of friends we see now and then, but never seem to find anyone really close. Some of us find ourselves in a pretty bleak space where we don’t really have anyone.

I started rebuilding my own networks from the outside in. That is, I started looking for acquaintances and people I might hang out with occasionally before I went looking for closer friends. There’s less being asked of someone at this level, so a lot more people will make great acquaintances. A few years back I started going to Mifsa (Mental Illness Fellowship of SA) looking for company. When I first walked in to the activity centre and looked around, I was really disappointed. No one else there seemed to be like me at all. Many of the other people openly asked what I was diagnosed with when they first met me, which I found really confronting. I was at the time very closeted about my mental illnesses and I refused to disclose. On one occasion another participant took this as a challenge and told me they’d be watching me to work out what I had! This wasn’t a great start and I stopped going.

Then it occurred to me that there could have been a whole stream of people like me, with my interests or similar experiences coming through the activity centre over the years – but until one of us stayed put we were never going to meet each other. So I decided to keep going anyway. It helped to have somewhere, however imperfect. Access to resources such as the internet, landline phone, cheap meals and food bank helped get me through some really tough times. And although I wasn’t close to most of the other people there, they were company, someone to play pool with or watch a movie with. Just that basic friendliness meet a need for me.

Sound Minds (Voice Hearers Group) was  a real turning point for me. Again, initially it was less than ideal. I was the only person there with a dissociative diagnosis, and at that time Mifsa had no books, fact sheets, experience or resources of any kind geared to dissociation. I had to explain myself a lot and I was very stressed and sensitive about my diagnosis. But I was accepted, and they let me come and be upset about my life without telling me I should look on the bright side. Out of this the Dissociative Initiative was born and now things are changing. Sound Minds was also originally geared towards education. The first time I went along and shared that I was lonely, the room went quiet. Several other people then shared that they were lonely too, and it was just something to get used to. I went home and decided that a room full of lonely people was daft. Gradually the group became more social, and now I have the whole bunch round to my place for a camp fire catch up regularly.

I’ve started to build networks through the mental health community by turning up to lots of events and being friendly and talking with other people. I’m starting to get to know people. I also want to make connections through different networks – which is part of the motivation for the mad amount of study I do in different areas. But I started much smaller – by looking in places where I had interests (such as art) or felt accepted despite challenges (walking into a building marked “Mental Illness Fellowship”).

I have also found online communities at times to be very supportive. Facebook helps keep me in touch with people I don’t get to see often or those I don’t know well enough to give my details to. Skype keeps me linked in to people a long way away. Some nights just being able to find someone else awake and have a quick chat even if about nothing personal has helped take the edge off. I’ve been part of online groups through Yahoo which helped me to understand a lot more about my mental health and have other people to talk to.

For relationships that have been intense and distant, as in the instance of some family members, I’ve read about relationships under stress and learned about boundaries, polarising, and other common issues. I’ve worked on lowering the intensity and reactivity in these relationships, resetting back to friendly acquaintance if I can and re-growing things gently. I’ve also done a lot of work on myself, accepting myself, learning assertiveness, better communication, and how to better contain the kinds of symptoms that cause me problems in my relationships – such as raw emotional intensity, impatience, ambivalence, emotional disconnection and preoccupation, irritability, and… you get the picture. I’ve had to do a lot of building a better relationship with myself instead of trying to resolve emotional pain through company. Having said that, I’ve been quite stunned at the incredible difference having some emotional and social support has made for me. A lot of that emotional reactivity and instability have settled by themselves. It is too damn hard to do this all by yourself.

I’ve had to let go of some relationships that were really important to me because they weren’t working and sometimes I am just too fragile to handle it. I’ve also had to learn how to accept a relationship that isn’t quite what I wanted or that changes over time. Sometimes you end up in a relationship where you are treating the other person as a best friend and they are treating you as an acquaintance – so you do a lot more nurturing and being involved then they do. It’s been a hard lesson to learn that sometimes if that’s the level of relationship they want or are comfortable with, that’s what it needs to be. Very close friends take time and energy to maintain, and there’s only room for so many in our lives sadly. Sometimes you think someone is awesome but so do a few other folks and they’ve already got their complement of close mates. It’s okay, keep looking, if you’re a good friend and you let things develop at a good gentle pace, you’ll make them.