Hello, it's Wednesday, and my face is numb, for no discernible reason. I happened to be seeing my doctor yesterday for an unrelated problem (also has no discernible cause, haha) and mentioned casually about the numbness while also pointing out that most of my bodily sensations are unreliable, and he did a tiny bit of bloodwork which was all normal and now I've moved on. It'll go away.
I wrote a lot in connection with this incident about somatoform disorders, but it's long and not ready to be a tip yet, so instead you're going to get an also too-long ramble about diagnoses that has a kind of general tip that you might hate because it makes everything complicated and you might want things to be simple.
Things are not simple. Among things, brains are not simple. Bodies not simple. If you run face first into a metal pole and your nose gets a little bit broken (true story), that is relatively simple. A mental illness diagnosis is not now and never will be simple.
There are a lot of reasons for that. Let's start with the fact that the 'bible' that U.S. doctors use to make diagnoses, the Diagnostic and Statistical Manual, or DSM (now on version 5), can be easily and cuttingly described as a work of fiction. I will never get over this article in The New Inquiry that treats the DSM 5 as a dystopian novel.
The DSM is overseen by committees of humans, and is subject to politics and fads, which is why prior versions of the DSM pathologized such things as homosexuality and the most current version has an entry for caffeine use disorder. The DSM includes very careful and entirely arbitrary criteria for applying diagnoses to people; if you have a history of depressive episodes and you have episodes that might seem to meet all the criteria for hypomania, but those episodes are not more than four days long, you're not bipolar, you're depressed. "Patients with somatization disorder (also known as Briquet's syndrome) present with unexplained physical symptoms beginning before 30 years of age, lasting several years, and including at least two gastrointestinal complaints, four pain symptoms, one pseudoneurologic problem, and one sexual symptom". If you have only three pain symptoms and one GI complaint, well, that's maybe a somatoform disorder NOS (not otherwise specified).
Meanwhile these arbitrary criteria correspond to no diagnostic test at all in any case. Sure, you can read a lot of studies about what's different and interesting about the frontal lobes or the white matter or the amygdalas of people who have been diagnosed with a particular mental illness, but none of these findings can be used to diagnose those illnesses and no gene or set of genes has been found that definitively and always and are the only thing that lead to a particular mental illness.
The DSM is so ungrounded in 'hard science' that even the National Institutes for Mental Health has begun to disavow it, wants to fund some kind of real, hard, scientific research on mental illness that will solidify our understanding of its biological underpinnings, a task I personally believe to be quixotic given that we could make a much bigger dent in the disease burden of mental illness through ensuring adequate food, housing, safety, and medical care (including mental healthcare) for everyone. No, I don't think that all mental illness is a product of social conditions and chronic and generational trauma (if it were I would expect myself to be a lot less mentally ill than I in fact am). But a whole lot of it would get a whole lot better if we cut back on the shitty conditions and the trauma.
If your insurance company is paying for any of your treatment you have a diagnosis code that comes from the DSM, because that is likely necessary for your insurance to pay. If you're new to therapy or there's nothing clearly very wrong, your diagnosis code might be one of the 309s, which is an adjustment disorder, a catchall "person having a hard time adjusting to some event in their life". All diagnoses codes are 3 digit numbers, followed by a dot, followed by some other numbers that modify the diagnosis. It’s like the Dewey Decimal System but for brains.
For example my diagnosis code (now) is 296.89, Bipolar II.
But, throughout my life, I’ve also met or nearly met the criteria for Major Depressive Disorder, one or more of the somatoform disorders, for various anxiety disorders, for obsessive compulsive disorder, for various body dysmorphias, for PTSD. Probably an alcohol use disorder at some points, certainly (lol) caffeine use disorder.
Some docs would throw these onto my list for good measure, and some patients would like that. There’s something satisfying about being able to point to a long list of things that are causing you distress. Me, knowing both that the diagnoses are arbitrary, and that a long list of things wrong brings me no relief, I don’t like to collect diagnoses.
I am interested in a diagnosis more for what it can do for me than for what it means or how well it describes the contours of my pain. The contours of my pain are protean, my mind is creative in the tortures it devises for me, the moment I get used to one unpleasant symptom another like clockwork arises to take its place. The diagnosis I have now is serviceable enough, is close enough to broadly describing what ails me, and offers enough flexibility in prescriptions and treatments to suit my needs.
I would seek a different diagnosis if I needed that diagnosis to access a medicine, a service, or an accommodation that seems likely to address a troublesome symptom. Otherwise, I don’t care.
I do not mean to say that the diagnoses have no relationship to reality at all. In particular, there does seem to be some broad, long-standing evidence for the existence of the bipolar disorders and the schizophrenias. Most doctors consider them to be two very different and quite heritable diseases, with a lot of historical evidence showing their existence and some of their major features throughout history and around the world.
But, there’s lots to disagree about or get confused there too. What we now call bipolar disorder used to be called manic depression and include recurrent depressions without so-called manic features. Now bipolar and depression are classed as two separate diseases even though many people with recurrent major depression might later be diagnosed as bipolar or only just miss a bipolar diagnosis because their hypomanias are just barely hypomanic or last less than four days. Meanwhile, between bipolar with psychosis and schizophrenia is schizoaffective disorder, a mix of the two, and the question of whether you’ll be diagnosed with bipolar disorder with psychotic features or with schizophrenia quite often is a question of race. If I were a black man I’d be much more likely to be diagnosed with schizophrenia.
Meanwhile I’ve found dialectical behavior therapy to be extraordinarily useful to me even though it’s a mode of therapy that was originally developed for use with people with borderline personality disorder, a diagnosis no one particularly wants and even the therapists frequently stigmatize. I don’t happen to need to acquire that diagnosis to make use of the therapy.
And, my diagnosis morphed from major depressive disorder to bipolar disorder in part as my care team started trying to stabilize my moods with drugs typically used for bipolar, not depression, like lithium and Seroquel, but in fact both lithium and Seroquel are well within the standard of care for adjunctive treatment of major depressive disorder. We could potentially have left me hanging out in Major Depressive Disorder forever, but, well, it didn't quite describe enough of my lived experience to satisfy me. Bipolar Disorder does.
Meanwhile, I still sometimes take antidepressants, which are supposed to be beneficial for major depressive disorder but are now considered to be completely contraindicated by a diagnosis of bipolar disorder, because even though many studies over many years show that antidepressants make bipolar disorder worse, it is my lived experience that they have sometimes been helpful.
What’s my point here?
Diagnoses of mental illness are embedded in particular social and historical moments and are made mainly on the basis of patient histories and observation (leaving them subject to all kinds of bias) more than they are on measurable biological realities, and the divisions between them are arbitrary.
A diagnosis carries some meaning with it but it’s not an identity and it’s unlikely to fully describe your complex experience of your complex mind. It helps to hold it lightly and seek more diagnoses when you need more treatment options rather than hoping that if you acquire enough of them they will completely describe and validate your pain and even point to a cure. Such an outcome is extraordinarily unlikely.
Some diagnoses are more stigmatized than others, so if you can avoid getting that actual diagnosis while still accessing treatments that it might suggest, that might be worth doing. A diagnosis of bipolar disorder is considered more serious than one of major depression -- your rates for such things as life insurance will be affected.
People whose records say psychosis will be treated differently than those whose records do not say psychosis, if you can get on an antipsychotic for the purpose of it being an adjunctive treatment for depression rather than because when you are very depressed you develop very powerful persecution complexes (i.e. your depression has psychotic features) then that would be better for you. And, if you can stick with adjustment disorder for quite a long while why not do that?
But hey look, I get if you want a name for it and a number for it and if the name and the number give you some sense of order. If so then by all means take the name and the number. I would not now give up my 296.89 even though I understand how contingent and partial it is. MDD did not cut it, it didn't make enough sense to me. This diagnosis does help me order my experience, point me toward others who have similar experiences, and suggest profitable avenues to explore to alleviate my pain.
And yes, it is helpful to order our experience in such ways.
Like all filing systems though, it’s best if you do not confuse it with reality. The map ain’t the territory, folks.
yours in emotional suffering solidarity,