John McManamy and the People's DSM: Finally, some reality.

I've been reading John McManamy's site recently.  He's the author of Living Well with Depression and Bipolar Disorder, a highly regarded book that I haven't read yet.  He's a journalist, he lives with bipolar, and he's got a pretty good grasp of brain science.

He's also got a fascinating project going called The People's DSM.  The forthcoming revision of the DSM 5 has a ton of problems.  It contradicts itself, it ignores the role that stress plays in triggering mental illness, and it generally continues the fine DSM tradition of lacking real scientific basis.

The People's DSM is an effort to create a way of categorizing and diagnosing mental illness based on the actual realities of -- get this -- people who have actual mental illnesses.



If you have a psychiatric diagnosis, you've almost certainly had the following experience:

You: Hey, doc, I was reading about Diagnosis Y, and a lot of it really makes sense to me.  I was wondering if maybe -- 

Doc (interrupts): No.  You have Diagnosis X. 

Or, alternatively:

You: I wanted to let you know that over the weekend I had Experience Z.  I was kind of concerned, so I wanted to --

Doc (interrupting):  You couldn't have had experience Z.  That only happens if you have Diagnosis Q.  You have Diagnosis X.   

Yeah.  Thanks for that.

The problem is that the brain is just not that simple.  It does not fit into the mostly arbitrary boxes of the DSM.  It is not a simple case of "people presenting with X will not have symptoms of Y", or even "diagnosis of X always precludes a diagnosis of Y".

When my doctor first suggested lamotrigine, I was shocked to discover that some mood researchers believe that there's a form of bipolar that doesn't even include hypomania.  Not all pdocs believe in this "soft bipolar" or "bipolar III", but if they do, guess what the first-line treatment is?  Lamotrigine.

Thing is, shortly after I was first diagnosed with depression, I read something about cyclothymia that resonated with me.  Basically, I was having some "up" days, and I had periods of very high energy.  When I brought it up with my therapist, she said flatly (almost snappishly), "No.  You don't have that."  A few months later, I was diagnosed with ADHD.  OK, I thought to myself, my "up" times are "really" the "hyperfocus" that is characteristic of ADHD.

What if they weren't?  What if I've spent 17 years with the wrong mood diagnosis?  How much of my life have I lost to medications that were sedating and ineffective?