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Like many, I’ve been worried that the revision of Diagnostic and Statistical Manual of Mental Disorders, the source for all our diagnoses, could lead to what’s been called the medicalization of normality. But there are even more fundamental problems inherent in the classification system itself. It slots you into a fixed category based on a checklist that ignores many symptoms, and the categories lack any means for measuring the progress of treatment over time.

In my own case, I’ve always had a depression diagnosis (under the DSM-4 system, that’s major depression – recurrent – non-psychotic). I’ve had various symptoms that don’t show up in the official criteria for this category. I’ve discussed some of them – especially anxiety (though it took me many years to think of mentioning it) – with psychiatrists and therapists, and they’ve been quite responsive. The problem is that there were many I never brought up, especially relating to the upside of the cycles that included the recurrent major depressive downside. Those high energy phases didn’t strike me as manic, as I understood the word (no climbing tall buildings or emptying bank accounts), so why talk about feeling incredibly good, or the less friendly but high-intensity fits of rage. What did they have to do with depression?

As John McManamy points out, there’s significant overlap between unipolar recurrent depression with bipolar depression, yet the classification system shuts them into different categories. I don’t know if I’ve been incompletely diagnosed all these years, but I do know that antidepressants have never worked very well for me and that I’ve done much better since I started taking lamictal.

Before the draft came out a couple of weeks ago, I was encouraged by a statement of guiding principles relating to dimensional assessments. The leadership seemed open to changing some of the basic problems of the classification system. You can read their ideas in the FAQ section of the DSM-5 website, especially the description of dimensional assessments. It’s worth quoting:

… In the earlier versions of DSM, as with the current DSM-IV, disorders were described and arranged by category, with a specific list of symptoms for each mental illness. In this categorical system, a person either had a symptom or they didn’t, and having a certain number of symptoms was required to receive a diagnosis. …

… The categorical syndromes do not always fit with the reality of the range of symptoms that individuals experience. … Also, because the criteria for diagnosis are “yes/no” (i.e., does the individual have this disorder or not?), in most cases there is no method in DSM-IV to account for the severity of the disorder, and thus no specified way to determine if the patient is improving with treatment.

… [D]imensional assessments … would allow clinicians to systematically evaluate patients on the full range of symptoms they may be experiencing. For instance, information about depressed mood, anxiety level, sleep quality and substance use would be important for clinicians to know regardless of the client’s diagnosis … [and] would allow clinicians to rate both the presence and the severity of the symptoms … . This rating could also be done to track a patient’s progress on treatment, allowing a way to note improvements even if the symptoms don’t disappear entirely.

This statement and the formation of a Working Group to develop proposals for dimensional assessment led me to hope that the draft might address the rigidity of the classification system itself. It doesn’t do that at all but does add an important element to the categorical approach in the form of severity and frequency ratings. If used in practice, a psychiatrist would have a much more complete picture of all symptoms, not just those that are part of the limited diagnostic definition – as well as new tools for measuring the progress of treatment.

The main practical concern of the draft is the development of very simple questionnaires for clients and psychiatrists to fill out. So there are more checklists, this time with scales to capture severity for the cross cutting dimensions and frequency for the mood disorders. (You can download drafts of the short forms for depression, anxiety and anger as well as the draft dimensional assessment on this page.)

The Dimensional Assessment has questions on the occurrence and severity of symptoms in three “domains” – suicide risk, substance abuse and a cross-cutting group for mood disorders. (This and the other assessment instruments have been developed through a National Institutes of Health program, called PROMIS, that is working on measurement of cross-domain symptoms for the practice of medicine as a whole.)

This dimensional information provides the basis for a severity-scale rating of the total condition of the patient rather than only the diagnosed disorder. The rating can range from normal (not ill at all) to “among the most extremely ill patients.” The questionnaires for specific disorders allow tracking of progress in terms of frequency of occurrence. The depression scale, for example, asks if you felt x in the last seven days, never, rarely, sometimes, often or always. This is hardly a perfect system, but it seems like a step forward in providing a much more useful approach to the condition of a client than that of the static diagnosis.

There are dozens of changes that have provoked severe criticism by many psychiatrists, psychologists, therapists and counselors. One of the most telling – and the one that I can readily confirm from my own attempts to make sense of this complicated document – is inconsistency in the writing and organization of the whole work. Dr. Allen Frances, who chaired the DSM-4 Task Force and is a sharp critic of the current revision, attributes this to lack of coordination and direction of numerous Working Groups that have been focused exclusively on their own subjects with very little communication across groups. The result, he says, is a collection of proposals that are full of ambiguous terms and that lack consistency with one another in terminology and approach. It’s well worth reading his recent critique, Opening Pandora’s Box: The 19 Worst Suggestions for DSM5.

If you haven’t already noticed, discussion and debate about the revisions are all over the media, but a great starting point in the blogging world is John McManamy’s extensive coverage at Knowledge is Necessity. His multi-post report cards on the depression and bipolar revisions are excellent guides, and they comprise only a small part of his detailed and ongoing review. The Carlat Psychiatry Blog also follows the revisions closely.

There will be more to come on DSM-5 here as well. Like it or not, this catechism of diagnosis affects everyone. Next up is an attempt to make sense of the proposed revisions for defining “mental disorder” and for diagnosing major depression.

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The words went up like walls, and I stepped inside to stay. I paced around in that confinement and after a while got to know the enclosure well. I liked its stillness and the sense of limits and order. Around me I read the names for mental things and emotions that I owned. They explained me, and I had a place to call home. I paid the rent in pain.

Depression, disease, obsessive thinking, mood disorder, isolation, sleep disturbance, paralysis of will, loss of concentration, anxiety, rage, hopelessness – I knew each one, the symptoms that likely would never go away, except for little breaks here and there. They were like furniture to rest in – or more than that, coordinates on a map that gave me location in the world. I could say: That’s where I live – right there.

At first, despite the inner emptiness and hurt, there was a comfort in knowing that all these symptoms were not my unique, damaged, failing self – but shared by millions all around the world – even named as a leading cause of disability. I was part of a vast economic loss with days, weeks, months, years of diminished capacity. Like all the rest, I wasn’t too helpful in getting the world’s work done. I added to their negative sum.

But after a while, I couldn’t take the dark cell anymore. I was afraid of what might happen there and resolved to move out, find brighter surroundings, know and hold my family again, thrive in my work, throw a little light around me – reform my life, reverse it completely. All that change, though, kept not happening.

I needed a sense of order, a sense of knowing where I was in the world of mind, feeling and spirit as well as place, worklife, community, country. I needed hooks to hold onto, and I had those, familiar after decades, hurtful as they were – but what would happen if I let them go? Would I grab onto new ones in a better life or would I drop in free fall to nothingness? I needed change to survive, but I feared change would leave me stranded in a place I couldn’t begin to understand. I never said that to myself at the time. I only knew how hard it was to stop depression. I could long for a new life, but getting there seemed impossible.

Depression was full of dreams of all that I might do – if only I could break myself away from it. But deciding among those possible new futures was the stopper. Deciding, after all, meant cutting away those many dreams, killing them off to pick the one that was real, that put me back on firm ground. But which one was that – and would I be any good at it? Somewhere deep down – and I can say now it was my twin, depression, talking – I felt a desperation to maintain that perverse and lightless stability. Reform is shape-shifting and letting go, and I was holding on. I believed so deeply that I could not change.

Most of the treatment people were not much help. Until recently, I never heard from a therapist or psychiatrist that ending life-long depression was even a possibility. They listened, opened up depths of history I needed to understand, offered sympathy, medication, temporary respite. At times, that stirred hope but mostly it confirmed illness, treatment resistance, the need for adaptation to an endless condition. I had a four-digit diagnostic number, and that would never change – unless at some point a fifth digit needed to be tacked on.

The words of explanation multiplied like the dreams of recovery. New findings of neuroscience, brain chemistry, changes in brain structures, neural pathways, genetics, increased likelihood of heart disease and bone loss, and then too the self-perpetuating nature of the illness. After a while, it kept itself going without need for an external push. My depression home seemed hard-wired, storm resistant.

But then – just like that – it was over – or mostly so. I suddenly believed that I could break out and so pushed against those hardening walls. Of course, they gave way, the word-bricks floated up like full balloons, burst at once and rained back down as bright ripped ribbons.

True, as I expected, it’s been hard to learn again the habits of life with people, the routines of work I love to do, the resilience of hope. And the hardest thing of all is keeping a determined mind and will not to go there again when the temptation to give up returns.

So how does this happen? What brings on, after so long, a change of spirit as deep as conversion? I’m not sure I will ever know exactly what it was. There’s no one cause of depression, so I wouldn’t expect to find a single cause of recovery.

It feels like a kind of grace, a gift, a quiet mystery.

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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?