What’s in a (DSM Diagnostic) Name?

When I started getting a diagnosis of “depression” years ago, I found myself assuming that this was the name for a permanent condition rather than one dimension in the changing nature of an unfolding life. Later, the term became more formalized as “major depressive disorder recurrent non-psychotic” under the DSM-IV classification system. In a way, it was a relief to know that what I was going through had a name and that millions of other people shared the problem. Later, I realized that holding onto the label was one of the biggest obstacles to recovery.

Names can have a powerful effect on how I look at the world. It’s always satisfying to have a label – even though it doesn’t add anything to what I already know from my own experience. When I knew the name of my diagnosis, I could then study all about it. Of course, what I was learning was based on interviews and data gathered from thousands of “cases” (those are people). For all I knew, I might have been one of that multitude whose history had been mentioned in a footnote somewhere. All those people under study had vastly different levels of pain, duration of their problems and ups and downs over time.

The DSM editors, though, had to sift all that to catch just the traits most people seemed to share. That allowed them to come up with a prototype definition with a list of criteria on which to base a diagnosis. The definition represents a very high level of abstraction from the observed realities of individuals, but it fits nicely into a classification system that tries to cover all the disorders so far recognized by the psychiatric profession.

After a while, I realized that I was paying more attention to what I read about the condition than to what I actually experienced. Of course, I knew what I was feeling, but now I tended to file one set of experiences under anxiety, another cluster under obsessive thinking, a very big one under bleakness or despair, yet another under impairment of thinking.

Even worse, though, I found myself looking to the prescribed treatments to “make” me feel better. So started years of going through one medication after another, only to find that none of them had lasting effects. I started to lose hope that I would ever get better – because I was getting the treatments appropriate to the diagnosis, and nothing was happening.

Here I had a the diagnosis with all its criteria and the latest thinking in treatment with no result. Strangely, no one ever suggested that the diagnosis, with its clear boundaries, might be wrong or oversimplifying a much more complicated and changeable set of conditions. I had my spot on the spectrum, and if nothing worked, there was a handy explanation. I was “treatment resistant.” That also had a nice ring to it. When explaining my problem to someone, I could reel off “major depressive disorder recurrent non-psychotic and treatment resistant.” How’s that for clarity, certainty and order? This permanent condition was my fate, so I’d better get used to it.

There I was, settled into my niche somewhere between wellness and the locked psychiatric ward. In retrospect, it seems “crazy” that the labels, criteria and prescriptions – and the authority they carried – could so narrow my imagination about recovery that I could believe it was impossible to reach.

As I mentioned in the last post, the ongoing revision in preparation for DSM-V has opened the possibility for rethinking its classification system of discrete illnesses. One proposal, in particular, sounds like it would create a much better fit between diagnosis and the messiness of living.

Dr. Steven Hyman, a former director of the National Institute of Mental Health. sees the current system as a wrong-headed interpretation of what people actually experience. I haven’t been able to find the text of his recent remarks, but here is the way an article in Time reports his ideas.

Dr. Steven Hyman … agitated at the meeting for a new DSM framework that would stop trying to divide mental problems into discrete all-or-nothing categories. …

Rather, Hyman argued that many mental illnesses are problems that lie along a continuum from normal and functioning to disordered and tragic. [H]e made the case that the DSM should regard mental illness as “continuous with normal”: less like leukemia and more like hypertension. You don’t get diagnosed with hypertension until you meet a cutoff point for high blood pressure that takes into account other extenuating factors: your age, for instance, or the conditions under which the blood-pressure reading is taken. …
A continuum model like the one Hyman proposes could help … by recognizing that people aren’t always one thing or another. They’re sometimes just a little depressed or a little anxious. To avoid medicalizing normal stress, [for example,] the DSM-V would set a cutoff point within the spectrum.

A change like this could have an enormous impact by building into the process of reaching a diagnosis a much wider consideration of the relationships among many different symptoms. Today, visiting a psychiatrist can result in multiple diagnoses, each of which is considered a distinct disorder. For example, even though severe anxiety is often associated with depression, anxiety disorders have their own class, distinct from the one for mood disorders such as depression. So I could have a separate diagnosis of social anxiety disorder. Or I could get a “double diagnosis” of dysthymia, the milder recurrent form of depression, along with major depression.

Getting multiple labels of supposedly distinct problems doesn’t change one bit the reality I’ve been living with. However, they do begin to change my sense of self-empowerment. If I have one illness, that might be manageable, but if I have four or five, I’m in big trouble. I may begin to believe that only my doctor and the prescribed treatments can lead me to recovery. My attitude, perhaps without conscious intention, may shift away from having personal responsibility for taking charge of recovery and toward the shelter of a psychiatrist’s authority.

Not all psychiatrists are eager to hand you a diagnosis – though they all have to make them in order to get reimbursed by insurance companies. Some of the doctors I’ve seen have downplayed diagnosis and not even mentioned one to me. But many do come out with the diagnosis and prescriptions of medication right away. It’s a rare psychiatrist who insists on placing a person at the center of his or her treatment. Instead, a person becomes a patient who has to be treated as a passive example of a distinct mental disorder (or two or three or four).

Using the alternative model of a continuum would take a lot of research for all 350 disorders identified in DSM-IV. That has begun, however, for some of the mood disorders. The Spectrum Project, for example, has developed new diagnostic instruments designed to locate people on a continuum that includes symptoms presently kept in distinct categories. It would likely take a long time, given all the vested interests favoring the present system, to effect such a major change. And there are other proposals besides this one that are being considered.

But I believe the hope and belief in themselves of millions of suffering people could be supported or restored with a change of paradigm.

What do you think?

Image: Some Rights Reserved by Tom(hmm a rosa tint) at Flickr