The Diagnostic and Statistical Manual: Friend or Foe?

I made a note to myself to write this post a long time ago, because as both a long-time diagnos-ee (what, I can’t make words up?) as well as a once upon a time would-be diagnos-er (yeah, I used to think I wanted to be a social worker…), the DSM is something I’ve become relatively familiar with. And I have mixed feelings about it. I think it’s those complicated feelings, not to mention the complexity of the topic (I mean, does anyone really know what they’re talking about when they try to discuss the 500 pound gospel of mental health?), that have kept me from attempting it until now. After an interesting conversation with my psychiatrist yesterday, however, I think perhaps it’s time to take it on. But first, a disclaimer: I am not an expert. I am not AT ALL an expert. I could make this post all heavy on research and facts, but that would be hard. And I don’t feel like doing any research. So I’m going to focus on what I know from first hand experience — what I’ve witnessed as the pluses and minuses of having a tome like the DSM. (side note: I did at least google around a little bit before writing this, and apparently there’s A LOT of discussion out there about the DSM and its downfalls. And it does seem to have quite a few downfalls. Case in point: I also discovered that homosexuality was recognized as a mental illness until 1973…)

To set the stage, a little background: At the age of 12, I was diagnosed with anorexia nervosa. Back then, the doctors I was seeing were using the DSM-IV (it’s recently been ‘upgraded’ to the DSM-V), so on every receipt I received for mental health services, I saw the code 307.1. That number and its accompanying diagnosis came to define me, and as I’m just now realizing, has played a significant role in how I’ve viewed myself for much of my life. So imagine my surprise when about a year ago, a doctor somewhat casually mentioned that I may not actually have anorexia after all. We didn’t really get into it, though, and I got my scrip for Prozac and left. I pondered it a bit afterward, but the more I did, the more I didn’t really give a shit. They could call it whatever the hell they wanted — It was ruining my life no matter what number you wanted to slap on it, and that’s all I cared about. So I didn’t really think any more of it.

Until yesterday.

Once again, this doctor brings up the fact that anorexia may not be the correct diagnosis for what I’ve been struggling with. Apparently the fact that I do not have a distorted body image or fear of gaining weight makes me “ineligible” for that label. (Funny that no one has ever told me that before….) According to this doctor, my symptoms may in fact be a result of untreated anxiety and depression, with perhaps a dab of OCD mixed in, which would in fact be much easier to treat. Now that got my attention. I’m all about easy to treat. So at my next appointment, we’re going to do some more investigating, maybe some über fun psychological testing, and figure this shit out.

My reaction to this new development has surprised me for several reason, one being that I was convinced I was over the whole label thing. I thought I didn’t care what I “had” as long as I could kick its ass. But all of a sudden I feel relieved. Like maybe I don’t have a death sentence hanging over my head after all. Maybe I will, after years and years of struggling, finally achieve full recovery. It’s strange to notice thoughts like these moving through my head because I didn’t realize I’d given up hope. To be fair, I’m still not so sure that I had, but two decades of fighting an illness that lives in both your brain and your body is tiring. It’s worn me down and after this long of a struggle without much to show for it, I guess I shouldn’t be so surprised that my hope got chipped away a little bit. So yes, this new development has reignited that old spark. This is something new. It’s not the same old, same old I’ve been getting from doctors for twenty years. That’s refreshing.

But anyway, enough about me. Let’s talk about that bitch of a book’s whole role in this. First, the glaring fact that out of the many, many, MANY doctors I have seen over the years, this is the first one to point out that I don’t meet one of the key criteria for the diagnosis of anorexia nervosa. In the past when I’ve told doctors (and therapists) that I don’t have a distorted body image, they’ve either A. thought I was lying, or B. thought I was unaware of it. I think the DSM is partly to blame for this, because when you walk into an office with a particular diagnosis, the treating professional (and I use that term loosely here) makes all sorts of assumptions about you. They assume you’re like every other person with that diagnosis and they forget to look at you as an INDIVIDUAL. They neglect to listen to anything you have to say that goes against what they’ve learned about said diagnosis. To be fair, I’m sure not every doctor, therapist, psychiatrist, what have you is this way, but in my experience, a hell of a lot of them are. So that’s my main beef with the book, and with labels in general, for that matter. If it were treated as a loose guide that would be one thing, but in my experience it’s not.

Another thing I witnessed while in inpatient treatment is the way insurance companies often require an official diagnosis before they agree to provide coverage. Many of the young men and women I encountered were turned away from getting the care they needed just because they didn’t meet one or two criteria defined by the DSM. Or they were discharged after just a few days (um, not enough time to recover from an eating disorder..)  Not only does this serve to deny people the treatment their lives quite literally depend on, but in many cases, it also reinforces in their minds that “they’re not sick after all” or they’re “not sick enough.” They may even use it as fuel to dive deeper into their disorders because after all, the pros say they don’t even have a problem. On the flip side, sometimes being given a diagnosis can make people feel helpless. They’re no longer individuals in charge of their own lives but pawns of a ‘disorder’ they can’t control.

And this is just the tip of the iceberg, limited as it is to my own personal experience. As I mentioned earlier, run a quick google search if you’re hungry for more. Granted, the DSM no doubt has its value. I’m certainly not suggesting it be banned or that we all host huge bonfire parties. I’m merely suggesting that it be used with care and urging professionals to maintain an open mind at all times. While a diagnosis can certainly help guide treatment, the DSM is a double edged sword and should be wielded with caution.

So, in summation:

Pros:

1. Diagnoses can help patients receive insurance coverage for treatment more easily.

2. Much like medical diagnoses, mental health diagnoses can help doctors and other helping professionals determine the best line of treatment

3. Having an illness recognized by the DSM can help to legitimize it as a real problem.

4. Yeah. Sorry. I can’t think of any more..

Cons:

1. NOT having a diagnosis can make it more difficult to receive insurance coverage for treatment.

2. Having a diagnosis can put you in a box. Just because your illness been given a particular label, professionals seem to assume you’re like every other person they’ve seen or read about with that label.

3. If your illness doesn’t fit the criteria defined by the DSM, your problems may not be treated as seriously. (see number 3 above; flip it around)

4. On the other hand, having a diagnosed mental illness can make you feel doomed or helpless.

5. I’m sure there are tons more.

I’d love to hear what others think. What have your experiences been, either as a patient or as a caregiver? Do you love the DSM or hate it? Have you ever been misdiagnosed and how did that affect you? Leave your opinion in the comments.

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