Diagnonsense… or the DSM-V

In New Zealand, in order to receive ACC assistance, you need to have a diagnosed mental illness directly related to the abusive injury. I know from reading other blogs, that health insurers around the world, often require a recognised diagnosis in order to provide (or exclude) coverage. Depending on where you’re from, that diagnosis is determined by either the DSM (Diagnostic and Statistical Manual) or the ICD (International Statistical Classification of Diseases and Related Health Problems). In New Zealand, we use the DSM, and this is currently being substantially revised – some say rewritten, and is due for release in 2013.  If you’re wondering why I’m worried about something that is so far away, well, this manual determines whether I will receive ongoing assistance, what that assistance will look like, I enjoy being an informed consumer, and I’m curious how mental health professionals perceive my various reactions to life.

At the moment, proposed revisions are being made to the DSM-5.  There had been all sorts of rumours circulating that there would be a whole plethora of new diagnoses, and the removal of others – including DID.  Based on my rather uneducated eye, the changes are “interesting” rather than sweeping.  Running through the disorders that I’ve been labelled with over the years, there’s an interesting mix of tightening of the definitions, and what seems a desire to create a “catch-all” diagnosis.  Here’s my take on a couple of them…

300.14 Dissociative Identity Disorder
My first concern is that they are now going to allow the disruption of identity states to be reported by the patient.  Call me cynical and a worry wort, but if you’ve read tales of caution about the “attractiveness” of having DID (for example Tempy’s entry Lemme just say it), then this may open the way for some misguided people who have problems, but not necessarily DID, to “seek” the diagnosis.

Then we get onto the “experience of possession”… I think they need to clarify this wording somewhat.  To me, it sounds like something associated with spiritual or religious possession.  That again, could just be my cynical take on it.  This could be saved by the wording of the last criteria, where the disturbance is not part of “accepted cultural or religious practice”.  But still, the word “possession” conjures a certain image that isn’t positive!

There now seems to be some acknowledgement that abusive events can be repressed – “Inability to recall important personal information, for everyday events or traumatic events, that is inconsistent with ordinary forgetfulness.” I know this won’t eliminate the False Memory Syndrome (FMS doesn’t appear in the DSM as far as I can tell) supporters, but it gives an official nod to the research supported indications that traumatic events can be suppressed, or forgotten as part of a coping mechanism (and the crowd goes wild – insert by Mickie).

According to the rationale behind the changes, this new wording is aimed at reducing the use of DDNOS, the understanding that forgetting everyday events is common (i.e. mild dissociation is common) and an indication that conversion and somatic conditions need to be looked at when making any diagnosis.  Personally, I think the wording could benefit from some further work.  I rather like having DDNOS as a “fall-back” diagnosis when I’m faced with a mental health professional who doesn’t believe in DID.  But overall, I can see some benefits to the changes – the big one for me is the inclusion of the inability to recall traumatic events.

309.81 Post Traumatic Stress Disorder
There seems to be further indication that dissociation is a normal response to trauma – something that the research has shown for years, with the wording “Dissociative reactions (e.g., flashbacks) in which the individual feels or acts as if the traumatic event(s) were recurring (Such reactions may occur on a continuum, with the most extreme expression being a complete loss of awareness of present surroundings.)”

Persistent distorted blame of self or others about the cause or consequences of the traumatic event(s)” – they’ve acknowledged that self-blame is an issue for survivors!

Irritable, angry, or aggressive behavior” – added aggressive behaviour, which is a great inclusion – I’m thinking in particular about my ex-husband with this one.

According to the rationale behind the changes, there appears to have been a great deal of input into this diagnosis, but little actually changed.  The changes that have been made appear positive in broadening the scope of the reactions that those with PTSD can have, as well as defining the time frame associated with the onset and continuation of symptoms.  I admit not to having as much of a vested interest in this diagnosis, as I think pretty much any survivor will fit this diagnosis.  It’s more about how far reaching it goes.  I appreciate that they’ve indicated the dissociative experiences that can occur – but it begs the question as to why DID is not on the PTSD spectrum?

301.83 Borderline Personality Disorder
I’ve heard of BPD being a diagnosis given when they don’t know what else to label you…  Overall, I think that those with the diagnosis have an incredibly bad reputation which is undeserved.  I’ve been labelled as having “Borderline traits”, but when reviewing the PTSD criteria, the behaviours that they describe as “borderline” could be PTSD.  In many ways, the revisions still allow BPD to be a “catch all” diagnosis for when they’re not sure what else to do with you.  It has aspects of PTSD, dissociation, psychosis, low self-esteem, impulsivity, etc.  When you look at the different aspects on the surface, it is easy to see how many survivors could meet the criteria; it’s only when you do the diagnostic tests that you realise that the severity needed to meet the diagnostic criteria.

To me, this diagnosis seems to have been fleshed out substantially.  This worries me when you consider the poor reputation and often poor treatment that those with BPD receive…  When I was initially given a diagnosis of DID, I was told there were no treatment plans for that diagnosis in New Zealand, so they sent me through the system with a diagnosis of BPD… I was shocked, dismayed and victimised by some of the mental health professionals who treated me as “another borderline”.  It’s taken many years for the public health system to remove BPD from my records.  I can see with this revision, that many more people may receive the diagnosis and associated poor treatment.  Mental health professionals really need to change their attitude to those with BPD.

———–

Overall, the revisions seem intent on minimising the use of the “NOS” diagnosis.  But in some areas it won’t be possible – from my understanding of the criteria, I will still meet the EDNOS diagnosis.  I’d encourage you to check out the proposed changes… it’s an interesting process they are undertaking.  There has been criticism that the work is being rushed, so that means we have more of an obligation to check it out – especially mental health professionals!

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Now playing: Sarah McLachlan – Angel
via FoxyTunes

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8 thoughts on “Diagnonsense… or the DSM-V

  1. It scares me, too. I live in the states and our insurance will only pay for 6 one-hour visits. I have never used the insurance for my DID therapy and I spend a lot each year on therapy – why in the world would I fake it? I guess some people would, I don’t know. When I took the concern to my T a few months ago, he told me that no matter what it’s called, or what page of the DSM IV it is on, I will still dissociate. That made sense, but it makes me angry that people who don’t have it and don’t know someone who does have it, can sit in judgment and screw us over. [steps off of soapbox]

    • It does seem odd that some people would want the DID diagnosis, but it seems as if it appeals to some people for some reason. I often doubt my own experience, so it seems odd to me that someone would seek out the diagnosis. I do know about wanting a name to help me describe and understand what I am experiencing though…

      It’s a soap box I often get on too 🙂

      Take care,
      CG

  2. I didn’t have much of a chance to study these beyond the basics of what you wrote. But I will talk to people I know, and my shrink who’s a DID “expert”.

    I noticed that the members of the work group on these disorders are academics, administrators and neuroscientists. There’s very very very little clinical experience in the group.

    Given that fact, you have to wonder what the point of this exercise is?

    It’s dumb if you ask me.

    I hate the DSM. It’s got a bad reputation because there are so many stupid things in it. The recommendations you mentioned (about self-reporting for DID, and “possession”) are things that no clinical person would ever agree to saying. The fact that they are in the draft language is appalling.

    But, yes, care is based around this book…

    If you ask me, it’s plain stupid to want to limit NOS categories. Medical disorders have these. Why does everything have to be black and white? What’s wrong with saying someone doesn’t fit the DID “mold”?

    Personally, I’d like to see DID go away and have DID and DD-NOS be combined as one. Just call it plain old DD.

    • Hi Paul,

      I find it incredibly scary that these people are deciding how we are going to be treated in the future. I know it can be explained with “it’s just a meaningless label, what matters is treating the presenting person”… but having been on the recieving end of bad treatment because of the label assigned to me, I know that they are important. These labels give the professionals you encounter an idea of how you’ll present, and a clue as to your past…

      I like the idea of DID disappearing and it being called DD. I think it exists on a spectrum, and it’s difficult to define spectrums. DD might also have less stigma attached to it…

      I’d be interested to see what the practicing professionals think of the changes… It does seem to be lacking that “coal-face” input into the process.

      Over here, compensation and care is determined by the DSM… it has huge power.

      Take care,
      CG

      • Just keep in mind, the DSM says nothing about treatments…

        Are you saying that the compensation and care is based on what the diagnosis is? Certain diagnoses garner more support? That would be why many of us are so against the US Government’s attempted takeover of healthcare.

        • I’m only going by what I have witnessed in New Zealand as a mental health consumer… In some instances the care options available are tied directly to the DSM diagnosis (e.g. you can get government funding to go on the DBT programme if you have been diagnoses as BPD). In the case of ACC, they use aspects of the DSM to determine the level of compensation you receive and potentially the length of time that you will be given to “heal” from that diagnosis. As an example, there are questions being asked about my ability to heal, because I have received over 150 ACC funded therapy appointments. This is outside their scope of expected outcomes based on my initial diagnosis of PTSD (which evolved to complex PTSD and then DID).

          This is only my biased view of it… The DSM has the power to be misused by officials, which is why I would be wary of US Government involvement in healthcare. But then, insurance companies also have that ability to misuse information 🙂

          Take care,
          CG

  3. The DSM manuals have expanded considerably since their initial introduction. They perpetuate a myth that all “mental” illnesses are biological in origin. And this is done to perpetuate a fraudulent, profit motivated juggernaut that flagrantly violates the human rights of many who have experienced deeply traumatic experiences. Many people have also been abused by psychiatry, against their will, and biological osychiatry has shady origins in eugenics as well. First do no harm? Anyone who hasn’t been hospitalised, take note. How would you feel if you first disclosed abuse to a mental health professional, and they told you not to talk about it, and worse, shoved you in a padded cell with a mattress or washing facilities and jabbed a needle up your ass, very distressing to a survivor of abuse, by the way, then insinuated you were delusional and making it all up. Just take a look at “rooms” in Fergusson Clinic circa 2000 in Christchurch on YouTube if you don’t believe me. Because this happens every day in mental institutions around New Zealand and the world. No-one who has been abused or mistreated has a biological “Borderline” Personality, they are responding to severe trauma in a normal way to a very sick and abnormal event. The fact that overwhelmingly throughout psychiatry’s dark and shameful history women and minorities have been on the receiving end of the worst stigma, is a scathing indictment on the chauvinistic fascism within psychiatry. Biological psychiatry removes human rights and the social context of mental suffering from the table. This serves corporate drug companies and many wealthy biological psychiatrists very well financially, they live in nice houses on the hill whilst their patients are subject to substandard housing in council or government apartment blocks, thorny questions about spotty work records, prejudice-basically economic violence, much of which wouldn’t happen without the DSM labels being used in the first instance. Biological psychaitry appears to have a logical positivist basis, in which the human being is an unchanging fixed entity, yet we know from other studies on the human organism that the brain is fluid and dynamic, always changing, much like nature as a whole. So mental suffering, I believe, exists on a continuum, in reality-one can be profoundly sad one day, then happy the next, due to changing circumstances or how one’s day is going. Biological psychiatry does not, in essence, believe in complete recovery, one always has to be “mentally ill” for the duration of one’s life, like, say, a diabetic has to take insulin. However, the drug companies do NOT tell you that outcomes for psychosis are better in countries in the developing world such as Nigeria and India, where drug treatments are not as widely used. They also don’t tell you that pilot studies in Finland-see Robert Whitaker’s “Mad In America”-have shown recovery rates much better for people on low medication dosage or even none when psychosocial interventions are included and chronic disability happens to those on higher dosages. And they don’t want us to know, because that would mean that the game would be up for them. Critical thinking is absent from the purely mechanistic worldview, however, it is an important process in any real science. For example, should you choose to hunt it down, there is much research that casts doubt on, for example, the therapeutic value of SSRIs. In fact, it was supressed by Eli Lily in 1985, but you won’t hear that from their sales reps. Also, think about drugs like Seroquel, Risperdal, Olanzapine. And then think about the dangers of 30-60 pound weight gain, diabetes risks, tachycardia, tardive dyskenesia(Parkinsons Syndrome). And think about drugs like Citalopram, and Paroxetine and suicide risk. Good medications, life saving? Diabetes is a very serious disease, Obesity has cardiovascular risks, and akathisia drives one insane with involuntary movement. Not to mention the horrors of trying to come off these neurotoxins-read any literature by psychiatrist Peter Breggin for a view critical of the biological status quo. In fact, there is a very healthy debate about the dangers of hubris in medicine outside the biological psychiatry paradigm. But with the DSM manuals-your illness is Fixed, unchanging, you have your madness forever? Sounds like, well, a delusion when there is much that poo poos biological psychiatry, doesn’t it. As for all these “disorders” my advice for those who sit around condoning waterboarding is to get a life, go ahead, have an out of body experience, hear voices and have visions, write songs like “Good Vibrations” and be involved in the creative process, because the world would be a very sad place indeed if it only had people considered “normal” by a bunch of hacks who sit around labelling and drugging up an increasing percentage of the population because they can’t handle their own mediocrity.

    • Hi Fighter,

      As you can tell from my post, I have a healthy level of skepticism towards the DSM and it’s listed diagnoses. However, as a person with a mental illness, I find that sometimes it’s useful. It allows me to put a name to my experiences and therefore helps me to “normalise” them. Yes, the language and diagnoses can become a box that the mental health profession can put you in, and that can be a great way to write someone off as a “typical borderline” etc; but sometimes their diagnoses and language can be helpful.

      I also have problems with the seemingly close ties between the pharma companies and the DSM, as well as psychiatrists in general. I realise that there needs to be some links in order to create an environment of best practice, but I think they go beyond that.

      However despite agreeing with you on those points, I respectfully disagree that all drugs are bad. I have struggled with a range of psychiatric symptoms for all my life, they have reached a point where they interfere with my everyday life to a great extent. Sometimes being able to take a psychiatric medicine has saved my life. I do think that medications can be over prescribed, but I also think that for some people they are life-savers. I would love to be able to have a medication that would enable my daily life to be more manageable, so that I can concentrate on the here and now, and the healing work that I need to do. I don’t have that medication, so I stumble along as best I can, using the skills that I’ve gained through therapy and using the prn medications when I need them.

      I think that the key to any successful recovery or management of a mental illness or even an average person encountering a difficult patch in their lives, is to treat the person as an individual. To listen to them, to not jump to conclusions about what they are experiencing, and to use a team approach to finding a solution which works for that individual. That solution may include drugs – sometimes I do believe it has to; but it might not.

      Having done a brief look into Peter Breggin’s work, I find it difficult to take seriously anyone who would publish a book that talks about the sexualisation of children in the way described in The Psychology of Freedom. It also appears as if his expert testimonies have been questioned because of the methodologies. I know that people on extreme ends of any debate will have their detractors. I like to read different people’s views and draw my own conclusions, but I tend to avoid those at the extremes – including those who are endorsed (with or without any ties or encouragement) by Scientology.

      I believe that the best way to help minimise the abuses that currently happen in the mental health field is education – for the consumer, their advocates and the professionals.

      People don’t have to have a mental illness to be creative, and they don’t have to lose that creativity when they are getting treated for that mental illness… although I know that the side effects of the drugs can dull everything so that the creativity feels lost. If this occurs, then it is a side effect, and needs to be considered in the context of the persons life.

      We should always be looking for better ways to help ourselves.

      Take care,
      CG

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