I don’t particularly believe in DID, schizophrenia, borderline personality disorder, or post traumatic stress disorder. I don’t believe in mental illnesses as parallels of physical diseases – cholera is caused by a bacteria – schizophrenia is caused by faulty genes. I believe in people’s experiences. I believe that the pain, confusion, suffering, terror, and risks of what we have called mental illness are real. I believe that people experience multiplicity, mania, hallucinations, tics. But the way we understand them – as symptoms of illness, the process of diagnosis, categorisation, research, and treatment – I’m unimpressed.
I recently read a dark and brilliant review of the DSM by Sam Kriss – written as if the manual was in fact a dystopian novel. It is brilliant, sad, and moving.
The DSM is the ‘psychiatrists Bible’, a massive reference of all the diagnoses we hear about; depression, bipolar, schizophrenia. In my opinion it is a massive project started for very legitimate reasons that has become a horrifying millstone around the necks of many of us.
Every few years it is re-written, updated, with much argument. A diagnosis is removed, or several collapsed together. A dozen or a hundred are added. A few jump categories. A few thousand people are startled to wake up one morning and find their condition doesn’t exist any more. A considerable number of the conditions are very rarely diagnosed, particularly in poorer areas (at least locally) where Depression and Anxiety are the diagnoses favoured by doctors who are not even aware of most of the rest of the options.
The idea behind a manual isn’t a bad one, to my mind. Language is important. Having words for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity. Our diagnostic manuals (the DSM and the ICD) were developed initially as a way of communicating between shrinks. A shorthand for what a patient was struggling with. It was important to define the terms because shrinks working independently, separated by continents, were starting to use the same words to describe vastly different experiences. We were beginning to explore the idea of madness, to break it down and tease it apart and discover that it was not all the one thing but instead many different things. We built new words for these new ideas and then needed to secure their meanings so that the language was useful.
We modelled the language upon the medical language of disease, with the expectation that the same cause and effect approach would be helpful. This causes that. The reality of human psychology is at times, highly predictable. We share certain needs, certain fears are near-universal, certain responses instinctive to most of us. But we are also complex. We have drafted massive tomes about abnormal psychology and have little idea of what, if anything, is left to be understood about normal psychology. We are beginning to grasp the frustrating reality that more than one cause can have the same effect – people develop eating disorders through grief, dissociation, fixation on weight, and chronic digestive diseases. We are beginning to understand that one cause can have different effects – some people with dissociation struggle with eating disorder issues, others with chronic sensory losses, memory issues, or depression. As we attempt to capture these nuances, our manuals get thicker and thicker.
With thicker manuals comes a big issue – more and more human behaviour is gathered into this category of ‘abnormal’. Psychological illness, injury, and normal functioning become tangled. Defining abnormal becomes nearly impossible. For example; if more than 70% of people who suffer three major life stressors in a year will struggle with an episode of depression, is this a normal or abnormal process?
Furthermore, is it an illness? Physically sick people who are fighting infection experience depression during the illness because they should be resting to heal. Are we able anymore to delineate between depression as something that is harming us, sucking the life from us, killing our joy, and the lethargy and pain and inward gaze of grief?
Increasingly mental illness becomes fuzzy, difficult to define. Another marker of ‘abnormal’ has been ‘unusual’. This is why being gay was in the DSM. If more people are straight then gay, doesn’t that make gay abnormal? The dangers of defining human existence by the tastes and appetites of the majority are such that almost certainly all of us are in some way ‘abnormal’, and the cost of this, the rejection of so many people from this hallowed goal of normality, are massive.
Abnormal is often shorthand for extreme. Ah! they say, you simply fail to understand the spectrum! Yes we all experience a little of this and of that, but until you’ve seen mania full blown, an acute psychotic episode, someone so debilitated by anxiety they cannot leave their house, you simply can’t appreciate what real mental illness looks like. This definition seems to work until you look at other examples of ‘extreme behaviours’, at social activists who put their lives at risk for a cause they are passionate about, at kids moving across the country to have a chance to train in the artform they eat and breathe, all the hope and joy and optimism of a couple in love and about to get married. Extreme can be dangerous, can be horrifying and destructive. But its also the place of hope for so many, their centre, their joy.
Abnormal can be shorthand for pain. When I write things like “I don’t believe in mental illnesses” that does NOT mean that I think people are making their experiences up, that they’re weak, lazy, vain, or self indulgent, or that there is not a real, overwhelming experience of profound fear and pain that can destroy people’s lives. The suffering is absolutely, definitely real. I have been there myself, I have been there as others have been broken or battered by it. I don’t actually believe we need a shorthand for pain. People use their own language to describe their experiences. They talk about being broken hearted, or empty, about feeling like their life is on fire, about the void that eats them alive at 3am when all the world is sleeping. A lot of the reason our manuals remain in such use is simply that we have organised our systems of care around this process of diagnosis. It’s a way of discerning those who need help. But I have a massive problem with the kind of help that starts by assuming there is something wrong with the person in pain. Sometimes whatever form the suffering takes does come out of the sky like lightning without warning and seemingly without sense. For others, suffering comes out of loss, trauma, loneliness – things that always cause people pain. There is nothing wrong with someone who hurts when they are harmed. It should be possible to grieve, to suffer, to need time off, to recover, without signing up to the idea that this is wrong and there is something wrong with you. As I’ve said before, if the process of mental health is about not hurting anymore, no matter what, then we’re trying to create psychopaths, not support humans.
‘Abnormal’ is often these days simply a way of referring to anyone who needs time off work or income support. Which again, is heartbreaking. It’s one of the reasons that deeply grieving people are now able to be diagnosed with depressive or adjustment disorders – because without this label of illness doctors are unable to compassionately exempt them from work or support them to access counselling or other treatments. Mental health as an idea starts to become twisted into something hyper-individualistic; someone who experiences none of the extremes of the human experience and never needs help from anyone to navigate life.
The DSM goes beyond a dictionary of terms because it links descriptions of single experiences together into syndromes, collections of symptoms that are given a diagnosis. These clusters shape diagnosis, treatment, and research. For some people, the cluster is a very good fit, describing all of their concerns and neither leaving something out nor adding something in. For many, they are not broad enough, so in order to capture all of the troubling experiences, they wind up with many diagnoses. Because of the medical model framework, this is seen by most as a sign that this person is sicker than someone with only one – or no diagnoses, when it doesn’t indicate anything than not fitting the common clusters! For some, the diagnoses are wildly inappropriate, as they have only one or two markers but wind up being diagnosed with the whole set in a dangerous prediction of their future experiences.
Some of the clusters are so poorly defined that the people group described by them vary so widely meaningful research is nearly impossible. For example, Borderline Personality Disorder requires 5 of 9 symptoms to be significantly present. Some people have all 9, some have one set of 5, others have the remaining four and a single overlapping symptom! To make diagnosis of BPD extra complex, many people who have experienced particularly childhood trauma will have some or all of these experiences for some years, and many people in current life crises will experience them also – yet this disorder describes an enduring pattern that plays out over many years. My experience has been that most young, distressed women in the mental health system will receive this diagnosis at some point. That is NOT to suggest that people don’t struggle with these issues long term, clearly many people do and some are my dear friends! But how the heck are we using one term for two people who potentially share a single experience in common?
Conversely, some diagnoses are defined so tightly that hardly anyone fits. Eating disorders can be like this, where a single symptom such as menstruation can see a woman bounce between one diagnosis and another and back again. In some categories the diagnoses are so narrowly constructed that most people who are struggling with a major issue in that area are given the catch all ‘not otherwise specified’ diagnosis. Which makes me wonder how well we are doing at the initial goal of creating a useful language for people.
The clusters exist for a reason – because they are commonly observed. But there’s two obvious dangers with grouping experiences like this. The first is that ‘commonly observed’ is going to not fit some people. Maybe even a lot of people. Which would be less of a big deal if we treated these syndromes like syndromes, but we don’t. We treat them as scientifically valid disease entities, which is a huge problem when someone doesn’t fit. Generally we start stacking them, which is similar to the effect on the stigma the person experiences. Two diagnoses is twice as bad as one when you have to prove you’re ‘well’ enough to work. Some people wind up with ten or more, each of which is confusing, depressing, and further alienating them from any sense that they might just be a ‘normal’ human having a tough time.
The second major risk with these clusters is the grouping of cause and effect, the mixing up of correlation and causation. For example, schizophrenia, which links experiences such as hallucinations to others such as dulled emotional expression or withdrawing from relationships. Each of these is seen to be part of this disease and yet one can cause the other, can have nothing to do with the other, or might not even be present for someone. Isolation due to bullying makes children more vulnerable to psychosis, for example, but in this case the trauma is a a key cause of the isolation, and both the trauma and the isolation are triggering the psychosis. People who experience hallucinations often find their close relationships become a mindfield of misunderstanding, miscommunication, and power battles about how to navigate the experience. Dulled emotional responsiveness is a common effect of feeling stuck in a double bind. Some voice hearers have no other symptoms of schizophrenia yet find themselves with that diagnosis for the simple reason that no other ‘hears voices but isn’t harmed or impaired’ category exists. Just because things may occur together does not make them all symptoms of a disease. Even more importantly – we cannot easily even perceive things that fall outside of our categories and language, which is why the idea of hearing voices meaning severe impairment has lingered on for so long – voice hearers who are not distressed or impaired don’t tend to volunteer to go round to their local shrink and talk about it!
I agree that we need a language, but I disagree that the DSM provides a good one. Utterly embedded in a language of deficits and loss, there’s little room for individual experience, for hope, for complexity or nuance. Abnormal becomes nebulous, and normal becomes a flatland of limited emotional range reserved for those to whom little has ever happened. Something terrifying happens when people are seen through this lens.
It doesn’t have to be this way. We can structure things differently. Ron Coleman wrote his own DSM Zero, a blank book for people to fill in themselves. Another shrink who’s name I can’t recall said in his mind, the entire DSM could be summed up to three states: “I feel bad, I feel crazy, or I make other people feel bad or crazy.” The rest was merely details. The underlying assumptions of the DSM about sanity and madness, about what is normal, what is human, and where the fault lies when people are suffering, are ones I find toxic. They dislocate people like me from my own self, from my own language and from my sense of being human and part of humanity. We can pull apart the edifice we have created and build something new, the way I have done for myself in understanding my experiences of multiplicity and psychosis. Personally my suggestion is to define terms but not cluster experiences, to make support possible without indicating whether ‘pathology’ is internal or external (ie whether the person is needing extra support because of things happening inside them or to them), and to be willing to use and respect the common terms people find helpful instead of forcing them to learn a new language of complex pseudo scientific terms. I think it’s okay to say broken hearted instead of depressed, or empty and chaotic instead of borderline. I think research becomes more useful when it looks at experiences instead of diseases formed of clusters of experiences, and I think those of us who live outside the bounds of so-called ‘normal’ are more likely to find hope and joy when we aren’t sold a story about ourselves that’s saturated in ideas of mental deficiency and impairment.
Sarah K Reece 
This is a great article, although I have a slightly different view. Psychiatry and psychology, in pathologising the impacts of all very painful experiences, have sided with perpetrators of abuse- child abuse, bullying, family violence, social oppression- and the DSM is part of that.
It labels normal impacts from abuse as ‘Complex PTSD’ or ‘DID’ or ‘BPD’ or ‘Schizophrenia’. It claims that it’s not normal to have severe ongoing impacts from being raped as a child: it denies that being abused as a child causes harm to humans. In my experience child abuse is the most common thing that people (who are experiencing extreme emotional pain and confusion) identify as the cause of their distress- unless they have been treated in the “mental health” system and been convinced by psychiatrists and counsellers that they are to blame for their own distress. Effectively, they blame victims for the harm others have done.
“Mental health” workers fail to assist people to report crimes to police, they often don’t even check if a person is safe from abuse now, or assist them to obtain safety.
I know you are saying that the situation isn’t black and white, that some workers and doctors have good intentions, but I find it hard to see how they can participate in this system and have good intent. This system which blames victims for the impacts of perpetrators actions (and the impacts of the systemic oppression of minorities in society) and fails to take any action to address the causes of distress.
It’s obscene because it colludes with perpetrators, who would also like everyone to believe that their actions cause little harm, and that any distress their victim experiences reflects the victims “maladaptive coping” rather than the damage done by their crimes.
The DSM, and all psychiatry and psychology are deeply dehumanising. They are ideologies that come from the viewpoints of the lives of the extremely privileged, who don’t even know they are privileged, and are used to judge the lives of those who have been abused and disadvantaged. Often by them.
Some days I can see some hope for reform, by making those with no lived experience work alongside those with, and challenging their blame and othering at every point. But other days I would jail most psychiatrists for keeping the world safe for criminals who abuse children, bullies, and every kind of social oppression. And I’d only let psychologists work in marketing.
And I’d make it compulsory for every helping worker to have the genuine expertise of lived experience and be out and proud of it, and who aren’t afraid of the normal, human, feelings and impacts of being abused, bullied, neglected or oppressed.
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Hey,
I agree with the sentiment in all of this post, and as usual find it to be a feat of insight and expression.
But here’s where I feel conflicted: at the heart of DSM it is meant to be a guide (‘manual’) for treatment/help. The negative connotations, clunky categories, misunderstanding or bad judgment that comes from those ‘treating’ ‘mental illness’ is a product of people who have misunderstanding, make bad judgments, have prejudices, or limitations, or insufficient skills. I find that good health professionals can and do recognise the limitations of the DSM and advocate for their clients/patients to navigate a clunky system. And that there are many people who operate within the DSM and try to make it as painless as possible and remove any imposition that it has on the individual.
I think it takes a certain kind of character strength though, or maybe a kind of perseverence and inner clarity, because a lot of people can be lost in this system and the overarching, broader system of healthcare, funding, insurance etc. And can really lose sight of clarity or human connection. But at the core it is there, and the DSM shouldn’t stand in the way.
I realise that I’m being a little idealistic in saying this, and I have had relatively little experience with being dehumanised compared to some, but I hope that the message is captured.
PS – The DSM goes through much controversy and if it’s of any consolation, they all drive each other nuts 😉
PPS – though your blog posts are my sanctuary when i’ve compromised too much of my essence to try to fit the system, it’s my own sign to take stock of where i am and mend the heart.
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By ‘guide’, I meant that it’s not just a common language or set of descriptors, it’s meant to conceptualise the types of experiences that trouble people, with an arm reaching into the cause and an arm reaching into the direction for treatment. The norm is just a curve, there is no shame in being abnormal.
(sorry noticed there’s no ‘edit’ function so am double-posting!)
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Hello Shel 🙂
I do agree that good people use the DSM pretty lightly and gently and don’t do major harm with it! There are a lot of good people in the system as you say, doing their best to guide people through it. I don’t think it is the cause of all evil and I understand why it’s been built the way it has and what we were replacing (which was far worse! Madness as moral weakness or demonic possession – lovely!). But I think it does take courage and strength to wield the DSM lightly, to treat the disorders as ‘common clusters’ instead of discrete disease states. I would say this is not the norm, at least in the public sector locally to me. That doesn’t mean that everyone who believes in the DSM is a bad person or is always doing harm to the people they treat.
I am SO grateful that my first psychotic episode was after I was very familiar with the Hearing Voices Movement because it meant I had a different story in my head about what this meant and what to do about it – other than schizophrenia, illness, meds, lifelong losses. I could do what I needed, communicate honestly, cope with my fear, and look for the upsides. How on earth does a 19 year old pull that off when they are never going to hear stories like that from their shrink – not because their shrink is mean or trying to be a problem, simply because the shrinks manual doesn’t allow for that possibility and the shrink has simply never heard of or met anyone with that experience. So psychosis creeps in, and with it absolute terror of madness and stigma, shame, secrecy, no friendly people helping them through, no knowledge of the importance of food, sleep, rest, and connection, no safe people helping them to reality, just a deep black pit that gets deeper by the day until they fall in so far they can’t hide it any more and their big secret is out and along comes the same stories of deficits and losses and stress management and taking your meds.
I think we DO need a manual, for exactly the reasons you state – a language, a discussion of cause, a suggestion of helpful approaches. I just don’t think what we have is anywhere good enough. Causes are frequently multi dimensional, as are helpful approaches. I think we can restructure what we have to capture more diversity and make it less abnormal. 😛
Thanks for stopping by and sharing your thoughts! The lack of an edit button irritates me also. 😉
Sarah
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Yeah, I agree that the system is usually ill-equipped to help those who have unusual experiences. There are ‘clinical’ ways to educate and help those professionals to do better though, and to offer help in ways that are more than support. Though by all means support should also be available.
I guess i believe that the DSM captures enough experiences in a way that guides how to help many people, if you consider all experiences that fall under the DSM and that are continually distressing enough to warrant a ‘diagnosis’. We happen to fall into a category that is both complex to conceptualise and hard to tackle the root of the problem. So we’re an exception and I think it’s recognised. There’s a little category for us falling under “high-functioning” that doesn’t deny our difficult experiences or patronise our abilities to cope. So I find it mandatory for any competent professional to do so, as well as be able to use any diagnostic category wisely, to know the difference between hearing voices that are distressing because they have trauma origins, and when it’s not the case. To know when it’s best prescribe and when it’s not. A plus if they know how it impacts us medically with the huge overlap in other, physical ailments. They should be well-informed in a way that is beyond personal preference for what approach to take. Those are the treatment decisions that should be happening and are guided by clinical wisdom, and if they are right they should lead to a good experience, and if they are wrong they should be open to adjusting that. And at no point should anyone be unresponsive to the personal experience, regardless of if they conceptualise the problem differently. Or to offload the politics of DSM onto the people they’re trying to help.
Lacking this, yeah, it’s far better to be accepted for who you are than to be MISdiagnosed and forced into unhelpful treatment.
There is a bigger voice and movement out there for the failings of the system though, and for experiences that are of a trauma origin too. But as much as I value the elegance and grace of some ‘psychotic’ experiences I wouldn’t want anyone to be deprived of options and an extra layer of resources and skill that can come from the more ‘clinical’ folks. Like the nuances of how to navigate a DID system, to tell neurobiologically which part is likely to be needing help due to the experiences you’re having eg flashback-hallucinations, to know when it’s a switch and when it’s bipolar, to get into the messy BPD category and realise which parts are crying out for help and why.
While I had my first serious/prolonged ‘psychotic’ experience I didn’t have HVN to help me, so I thought it was just me, and I didn’t tell anyone because I didn’t think they’d understand. What really freed me from this experience was finding out from an online forum and then a book, that there has long been oversight of this. I don’t really relate to the notion of distancing from the word ‘psychosis’ just because there’s a ‘rational’ explanation for it such as trauma, but it did comfort me that at least for my type of psychosis, there were competent and knowledgeable people who knew about this all along, even back then when I didn’t trust others to know. And even when i couldn’t imagine such help from any professional near me.
I guess I’m just trying to de-emphasise the clunkiness inherent of the entire system and put the focus back on people who are not adequately doing their jobs, and finding the momentum alongside allies who use good judgment and good skill, and actually have something clinically valid to offer as well.
I hope i’ve said this somewhat coherently… hope i haven’t overlooked anything! Let me know if i have, or if i’ve veered off into ideological fairyland.
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Alrighty! I needed to get onto my computer, copy and paste your comment over to a word document so I could read it all and break it down enough to reply lol!
I think you are dividing ‘clinical’ and ‘support’ into separate categories? Clinical being the psych/medical approach and support being sort of hand holding?
I don’t think we are that different to be honest. I think we are lucky to be part of a community that successfully organised around a single experience, but my work in mental health has constantly brought me into contact with people who don’t fit and who’s needs are not served by the DSM and that’s not just voice hearers and multiples, that’s also people with major depression and eating disorders and so on.
I think clinical wisdom is about knowing the limits of your field and the risks of both diagnosis and treatment. I think it’s a limited kind of wisdom – important but not all important. I think maybe you think I’m saying we shouldn’t have shrinks? Definitely not what I’m saying at all – mental health is a specialist field and we need people with a passion for it to help people and talk communities through how it works – I am saying though that the DSM approach is part of the massive them/us stigma and discrimination, the loss of shared humanity, the conceptualisation of difference as deficit. NOT by all shrinks but certainly by the actual text, and certainly how some apply it. We should not need the kindness, wisdom, and compassion of a few to help overcome our tools to approach suffering and difference. They should be inherent parts of the tools themselves and the structures for support.
I think perhaps that’s the heart of what we’re both saying? You are saying (I think) that the DSM in itself and the system we have of explaining things like psychosis and supporting people through them is useful and although occasionally clunky and lacking in nuance, when used as a tool by perceptive and caring people, works adequately. (please correct me if I’ve misunderstood)
Whereas what I’m saying is that tool itself is structured in such a way that it shapes what we think and how we react to people very negatively. Whilst some people find their natural compassion, wisdom, and respect overcome the limitations of the tools and structure and provide superb services and support, for many it actually overrides their native skills, teaches them dangerous and limited ideas about how people work, and makes them far more useless and dangerous than they would otherwise be. I suspect we both agree that some are simply arseholes who shouldn’t be able to get work in the system and no framework or conceptual tool is going to make any difference to how they operate.
Maybe I haven’t said strongly enough that while I wildly disagree with the tools and structure, I absolutely consider many of the PEOPLE to be allies! I still see a shrink myself, and I’m glad to work her. I’m building the HVN and DI with the collaboration and partnership of people trained as psychologists, mental health nurses, and so on. 🙂 They are my friends! This certainly isn’t intended to be an attack on them, or on their professions. I think better tools and structure would make it easier for these allies – especially all the ones who can’t share their own experience of ‘mental illness’ for fear of losing their jobs! I think better tools would make it easier for communities to move beyond the illness model and see that even pain and loss and disability come with contexts that can be grasped and used to our benefit. I think better tools would make people less afraid to talk about what they are experiencing and find support when they need it.
Have I grasped the essence of the conversation? 😀 🙂
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Just like your post in “iatrogenic DID” I love how smart you are, and how thoughtfully you write about these issues. I don’t disagree with much you have said here. There are so many politics and financial issues surrounding the whole issue of diagnosis, which is required for insurance reimbursement and therefore treatment. Just wondering though…do you believe in mental illness at all? Do you think there are biological issues in the brains of people who fit the criteria for those conditions that are described in the DSM, which are impacting their ability to function, and therefore require treatment of some kind? Sorry if you have addressed this question before on your blog…I haven’t had a chance to read it all….
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Hello hello 🙂 Thanks, you’re right, it’s a very messy field with a lot more tangled up than just ‘how should we best respond to people who are struggling’. Brain biology! Heck yes I think it can go wrong, like any part of the body. But the funny thing we have at the moment is a divide between ‘physical illness’ and ‘mental illness’ where basically, the moment we figure something biological out that’s behind weird experiences or behaviour, we call it a ‘physical illness’ whether it’s damaged nerve cells, tumour, thyroid problems or so on – even if the primary effect is mind based (eg dementia).
I don’t for a moment believe that we fully understand the brain, but a lot of the claims that get made in the field of mental illness – eg. that psychosis causes irreprable harm to the brain, that serotonin deficiency can be measured and diagnosed accurately, that certain meds correct a dopamine imbalance – are wildly unsubstantiated. They are best, guesses as to why some thing happens and some meds help some people, at worst they are advertising by the companies who make them.
So, I don’t think we can always nail down what’s going on when a person is struggling – environmental, internal, biological or a bit of each. Certainly our stress tolerance is difference and our cracking points seem to be different ie two people placed under the same stress will show it in different ways. There are a lot of people who find primarily biological approaches such as diet changes or exercise to be massively helpful in keeping their head together.
Treatment. Tricky word! Back to doctor/patient dynamic. I don’t think we can treat or cure the mind or heart. I think we can support people, or abandon them, help them get needs met, access resources and information, peers, have safer places to explore what they’re experiencing. But treat, in the sense of make them better where all they have to do is shut up and follow the advise or take the meds? ‘Obedient patient’ can be a dangerous role for people to play when it comes to mental health. And yet, we have to intervene at times. Sometimes people are in danger, and someone has to put the brakes on. But I’m not sure that the same thing as treatment, anymore than arresting someone is treatment.
Good luck on reading the blog, it’s getting pretty large these days! 🙂 Thanks for your thoughts.
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Hi Sarah,
I have to say you have a lot of good points in this blog. I haven’t read the latest DSM, which I’ve heard is a lot worse than the previous ones. I know a lot of the reason it even exists as it does in America now is because of the insurance industry and the need to be able to get treatment paid for for people who do have insurance. They require by law that you have a medical model of mental illness in order to receive unlimited therapy and psychiatric visits. Now they have to offer mental health treatment to be paid for everyone in the same manner that they would a physical illness, but it didn’t used to be that way. Still, I believe that one does not get “unlimited” treatment unless they have what is considered a medically caused illness…..the ones that are supposedly caused by an imbalance of chemicals in the brain or brain trauma or deficit of some kind. That’s a sad state of affairs along with all the others that face people in America who try to get any sort of help for any sort of struggle in life they may find themselves experiencing mental health wise.
I don’t think these labels in any way otherwise serve the clients that use these services except perhaps to understand some of what’s going on with themselves. For some people it helps that it now makes more sense. For others it only compounds the grief they end up feeling and the stigma they end up facing.
However, even after saying all of that, I have to say the DSM 4 was helpful to me as a therapist in grasping what might be going on with someone who is exhibiting a certain set of symptoms. The thing is, that unless these symptoms are bothersome to the client in some way, or causing problems in some major area of their life, they should not be diagnosed at all with any illness according to this very same manual. In other words, someone could be experiencing what some would term schizophrenia but if it’s not causing them any issues that are of a negative nature, they really shouldn’t be diagnosed with schizophrenia, even if they have the criteria of symptoms. This is one of the axises of illness diagnosis that has to be evaluated also for every person. The problem is most Drs and even most therapists forget that part. They don’t use all of the axises, only the first two.
All of this has led to the pathology of normal distressing experiences such as grief, excessive stress, poor coping skills, etc. Normal human experiences that almost everyone goes through. That part of your blog I completely agree with.
Another thing I really hated about the DSM was the way they use it to address addiction. Unless there is physical withdrawal observed when not high on the drug, one is not supposed to diagnose addiction. They can diagnose abuse of a drug but not addiction. I cannot even remember how many arguments I had with people in the mental health/addiction field over this. Even abuse cannot be diagnosed unless the use of the drug is causing problems in some area of the person’s life. Many people who work in the mental health/addiction field forget this or don’t grasp it.
So the DSM actually does have some positive uses in the mental health industry, which is what it is becoming here, but it has to be used with common sense and in the proper way that it was meant to be used.
I hope you are well. As always I found your writing to be very insightful and a pleasure to read. Thank you.
Samira
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Hello Samira, I had to wait until I got a moment on my computer to reply, my little phone screen wasn’t up to the task of reading back and forth between comment and reply. Thanks for sharing your thoughts 🙂 I think you have some extremely important points! I agree that the DSM can be used well and wisely, and I’ve been fortunate to witness that at times. 🙂 I also strongly agree that we need things that help those of us who are trying to support people in distress. First year out residents are under a hell of a lot of stress and I get that! The first time I sat in a room with a floridly psychotic person I could hardly think straight, I felt so confronted and afraid. The same for the first friend I visited in hospital following an attempt to kill themselves, Sitting with a person in extreme emotional distressing, literally sobbing themselves hoarse scared me witless. And as a young person I was baffled and disturbed by a classmates wounds of self harm. This stuff is hard! It’s frightening and stressful to witness, let alone feel a sense of responsibility for bringing some calm and peace to the situation! So yes, we absolutely need a language to be able to talk about things like compulsive hair pulling or panic attacks. I think that’s extremely important, as is some basic ‘nursing’ skills – how to sit with someone in pain. How to empathise with a frightened person without becoming scared. Those kinds of skills.
I understand that the DSM is what we have, I just think we could do better. We could write our manual in such a way that it doesn’t take such wisdom and care to use it, that it isn’t written from a disease perspective.
It deeply concerns me that people who are unconcerned are not supposed to have a diagnosis, for two reasons – one is that in fields such as psychosis, this is simply seen to be anosognosia or lack of insight – proof of the illness if you will. It rarely prevents diagnosis and compelled treatment in my experience. The second is that people like me technically have no language. If I’m not bothered by being multiple that means I don’t have a diagnosis, which means I don’t have any way of describing my experiences to other people except those I invent (such as multiplicity or plurality). It would be like leaving ‘distress at your sexual identity’ as a disorder in the DSM without ever telling ANYONE in the whole field of psychology/psychiatry/social work etc that some people are gay/lesbian/bi etc and totally fine with that. Even more – no one else in the culture has heard of someone being (let’s say) bi, and totally fine with that because everyone who is bi and okay with it is deeply closeted. So everytime someone realises – whoah I think I might be bi – they don’t have a peer group. They don’t have anyone to share about their experiences with or use as a role model. They’re scared as all hell and don’t know what it means so they go to a shrink who instead of saying hey this is normal, there’s nothing wrong with you, let me give you some contact details of local groups where you can hang out with similar people – but feel free to keep seeing me if you’re finding things hard or want to talk about it or you’re feeling bad about it – they get told “Oh you have this ‘distress at your sexual identity’ condition, yeah that’s pretty bad, I see a few people with that”, and go on to be treated and medicated for it.
It really matters to me that we cut people off like this and scare everyone else into silence. I know SO MANY people who have lived experience of things like multiplicity or voice hearing who are living WELL and working and deeply closeted because the cost of coming out would be too high in a world where it’s simply not seen as possible to have these experiences and also be safe, trustworthy, employable, or sane. When a shrink (Marius Romme) sent out a request to the general public for people who have ever heard voices to get in touch and share a little of their experience totally anonymously he was stunned by the hundreds who were not distressed and did not have any other experiences of ‘mental illness’ but had kept silent. A basic tenant of the hearing voices movement is that maybe sometimes there’s more to be gained when distressed voice hearers learn from the experiences of those who aren’t distressed, than by sitting them with an ‘expert’ who has no idea what it’s like and trying very hard to turn them back into a non-voice hearer. This is just a simple error of data sampling and the way we’ve set up our categories. There’s certainly an argument that it’s unwise for people to self diagnose something like schizophrenia, but people can certainly tell when they hear voices or not. We need a language for ‘voice hearer who isn’t distressed’ and also for ‘voice hearer who is sometimes distressed’. I shouldn’t have to pick a camp about whether I’m sufficiently upset to warrant a diagnosis or if I’m a happy multiple, some days are one and some the other! Like everything.
Anyway. I agree that the DSM is misused and that aspects of it such as the axis of assessment are not as appalling as what actually frequently happens in practice, but I’m still distressed by an entire manual about diverse human behaviour reduced to the downsides and deficits and imposed on people who don’t know that anything else is possible, with the added weight of the idea that these are ‘real diseases’ backed by facts and research and the thoughts and opinions of the actual person count for nothing beside them.
Good points!
Sarah
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