First published on May 21, 2013 by Paula J. Caplan, Ph.D. in Science Isn't Golden
In recent weeks, as the publication of the psychiatric diagnostic manual called DSM-5 approached, and media people paid it much attention, people who know that my work on exposing the truth about psychiatric diagnosis began more than a quarter of a century ago (1) have contacted me to ask why I was not adding my voice to the brouhaha.
I was aware of two of the answers to their question: (i)I had nothing to say beyond what I have been saying for decades, and (ii)I am busy.
Then I realized there was another: I was experiencing a kind of existential nausea, watching the sound and fury whipped up by both DSM advocates and critics and by the media. Why the nausea? I struggle constantly against becoming jaded, but when for decades you've seen powerful people get away with distortions and even lies, lies that hurt the people they profess to help, it's hard not to want at times to flee from the field. In all the frenzy, what was appallingly left out -- as it has always been from the activities of those who have the power to make real change -- was any real work to redress the harm done on the basis of psychiatric diagnosis over decades to living, breathing human beings. More about this later.
Most of this essay will be the words of one of those who has been so harmed and who wrote to me out of her own existential nausea as the harm done to her by diagnosis continues, seemingly never to end. That is where the attention of all of us should go and remain.
At one point, I thought maybe I should write something more. It was when a top dog at the National Institute of Mental Health -- shortly before the manual's publication -- dissed the DSM-5, noting that it lacks validity(2) and announced that the NIMH was going to develop its own method of psychiatric classification, and from his description, it looked like their emphasis would be heavily weighted toward looking for brain- and other biologically-based sources of emotional problems.
I was inclined to write an essay to point out that there was no sign in that announcement that the NIMH heads were aware of the wealth of solid evidence that nonbiological factors such as violence and other kinds of trauma and oppression, as well as other social and environmental factors, cause vast amounts of human suffering that is manifested in a wide variety of ways. Why would the NIMH not announce that they would focus at least in part on such factors and on the well-documented ways of helping people heal when those are the causes of their pain?
I also considered writing an essay in which I would ask what took the NIMH so long to pronounce the DSM undeserving of its support. I wondered why -- given that the NIMH had given the DSM folks huge amounts of money to work on the new edition of the manual, which promised to earn the lobby group called the American Psychiatric Association vast profits from the book -- they would at this late date announce that the manual sucks. Since the NIMH is the U.S. government entity with the greatest responsibility for funding and overseeing research about mental health, NIMH head Dr. Thomas Insel had either (A) been totally irresponsible in failing to notice long before this that no edition of the manual, and certainly not this one, had been shown to be valid, that is, to be useful for reducing human suffering or (B) concealed his knowledge of its lack of validity until the last minute, a concealment for which there could be no legitimate reason.
Then, within a few days, Insel pretty much recanted. He and the current APA president issued a joint statement in which they declared that the DSM -- as well as the International Classification of Diseases (the World Health Organization publication whose psychiatric section is purposely nearly identical to the DSM) -- "represents the best information currently available for clinical diagnosis of mental disorders. Patients, families, and insurers can be confident that effective treatments are available and that the DSM is the key resource for delivering the best available care" (3). Good God: They promise that it helps! Did Insel suddenly discover that the DSM is valid, really does reduce human suffering? Was his earlier announcement based on a whopping mistake? Clearly not, since, as noted, there is no evidence that the manual is helpful in that way. When I try to think why Insel would recant -- a recanting that is nothing less than an attempt to cover up the dangers of psychiatric diagnosis -- the nausea intensifies.
WHAT REALLY MATTERS
Please join me in focusing on what is most important, which is to listen to the voices of the many whose lives have been ruined in a cascade of events that began with psychiatric diagnosis as the "first cause." As you read the recent, heartfelt emails one such woman sent to me, I ask that you not forget that most of us never hear from most of those who have been so harmed.
Certainly neither the previous DSM editor Allen Frances (who more than any individual in history is responsible for the psychiatric diagnosing of millions more people than ever before and who alternates between trashing psych diagnosis overall and falsely claiming that his edition of the manual was based on scrupulously scientific procedures) nor the DSM-5 heads nor past or current APA presidents or trustees has proposed any mechanism for seeking out and documenting instances of harm or any mechanism for redressing past harm. Frances very recently repeated my much earlier proposals for blackbox warnings on the manual and suggested Congressional involvement. This guy loves my ideas! I had organized two Congressional briefings starting in 2002, have for a decade had a petition calling for Congressional hearings about psych diagnosis, posted another such petition at change.org in December, 2011 -- but he has fled from working with me to make real change and appears not even to have signed these petitions.
No one currently or formerly part of a DSM project nor anyone in the APA has acted on the requests made by the "DSM-9," those who filed ethics complaints about harm from diagnosis with the APA's ethics department. The requests included vigorous attempts to gather and make public information about harm from diagnosis, steps to prevent future harm, and steps to redress harm already done.
Now see what one person wrote to me on May 15 -- in the midst of the DSM media circus:
My therapist asked me today, why, if I don't agree with the bipolar "diagnosis", do i cash the social security check I receive each month...my main source of income...the only income I had once I was labeled bipolar as an adolescent and the drugged into total disability for over 15 years of my life. During that time, I couldn't work or get through college even though I maintained a 4.0 while I was there. But I was loaded up on debilitating drugs and shuffled through the system's revolving doors, where I was taught over and over that the best I could hope for was to take the "medication" and "maintain in the community". I was violently assaulted by staff and have permanent injuries, terrorized, threatened, humiliated and degraded in that system. I was never safe.
I don't feel safe from them to this day. I don't think I'll ever feel safe from them again and all the harm those dehumanizing, reducing labels have brought to my life. And this one person who is supposed to be able to listen and not judge and maybe help me move past that trauma, just wants to use the same labels in response to the effects of the trauma they caused. I never got that label until they drugged me. There's no help out there for psychiatric trauma. There's none. I barely make ends meet and pay for therapy out of that social security check and my part time work. I work that job just to cover the therapy. My finances were destroyed when I was being drugged and locked in hospitals 3-4 times a year. I have almost no work history at all, because they turned me into a professional patient. I can't even get a job on the books without having income seized. I can't even afford bankruptcy, and I can't get it through legal aid, because according to them, I "have nothing to lose". They have to help people who could lose their homes and cars and other assets. I have a studio apartment and a leased car and about $80,000 in student loan debt. I have diabetes from the psych drugs, and no health insurance. Why do I cash in on the social security check that lets me survive after all that was taken away from me?
What am I supposed to say to that, and why do they insist on pathologizing with these fake "diagnoses"? They took everything, but my feelings about it all are unreasonable and excessive. Survivors of psychiatry are invisible and unheard. That doesn't change. After today, I know I'm never going to escape it. Never.
And all I can think of is thank god you're doing the work you're doing. Thank you. You'll be able to save some people from the practices that have killed my friends and will eventually to kill me.
And later that day, in response to a reply I sent her, she wrote:
It's like you're the only person seeing the harm or listening to us when we tell our stories. There's a clip on the youtube Recovery and Hope channel from a talk you gave on this topic that I watch over and over again at times likes this, just so I know that it's not me being crazy with my ideas about the harm. I even sent it to my therapist today.
I was about to send her a message earlier, telling her that after today, I realized it was not going to work out and that I think we should terminate, when the phone rang, and she was calling to tell me she'd be away next week and had forgotten to tell me today. So, I told her right then and there on the phone that it's time to start termination. And she suddenly changed her whole tune. She wanted to know why. I explained yet again, and this time she was telling me that I explained it to her in a different way, and that I was having a breakthrough with how I communicate, and that we could work on this or that if I wanted and...blah blah blah. I was stunned. But when I talked a little more about the problems I am having with her pathologizing language and her dismissal of my lived experience, even about the harm done by diagnosis and how the DSM is a load of crap, she got very defensive again, and said then maybe we aren't a good fit due to "the differences in our philosophies". I have lived experience. This is my trauma we're supposedly working to resolve. It's not just a philosophy for me. But every single time this comes up, she will repeat back how awful and terrible it is that I had those experiences and then comes the BUT........."BUT, other people think diagnosis is helpful. They also find medication very useful. They can get out of bed and function because of it." etc. This is followed always with the statement that I am just generalizing based on my own experience. What is she doing with hers?
So, again we came back around to me saying I think it's just time to terminate, and again...she changes her stance with me. I am confused. I don't know what she is doing. I know what she believes she is doing. She thinks she is pointing out some kind of faulty thinking, and that my inability to accept, or frankly, even tolerate her imposition of her own philosophy onto to my lived experience is just emotional "reactivity" and "mood swings" on my part, both related to some category in the DSM, which she believes is a valid and reliable and useful diagnostic tool. We just go around and around.
I don't see her again until the 29th, because she'll be away, and I'm relieved. As it stands, we left it that we'll see how things go, but I said I'm leaning towards termination. After talking to my sister tonight and going over all of this, I know I need to definitely begin terminating when I see her again. It's just re-traumatizing me.
I've looked into other therapists, but even with a sliding fee, I really can't afford anyone else that I've found. Aside from that, I just can't do this anymore. No one gets it. I can't put myself through it anymore. Realizing that I can't have the help I need is the hardest part, but I've realized I will only continue to get hurt worse if I keep trying, and I have so many other things I need, that the money is better spent elsewhere.
It would also be okay to share [my emails on your Psychology Today blog]. It would be helpful, because no matter what, when survivors tell our stories, we mostly don't get heard at all. I just feel de-voiced and paralyzed.
(1) See, for example, Paula J. Caplan. (1995). They Say You're Crazy: How the World's Most Powerful Psychiatrists Decide Who's Normal. (Addison-Wesley), as well as many essays on this blog.
(2)http://www.reuters.com/article/2013/05/17/us-science-psychiatry-dsm-idUSBRE94G04420130517 and http://www.nimh.nih.gov/about/director/2013/transforming-diagnosi...
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