Accepting a Diagnosis

why agree to the label?

[This post was motivated by a recent post by Awais Aftab, which I highly recommend. There is a lot more to say—this post is a tiny attempt to say a bit of it from the patient’s perspective—but Aftab’s post is really a worthy start.]

The patient, white, male, aged 24, was admitted to Addenbrooke’s Hospital, taken there by a porter from King’s College, having been found wandering in a cowfield for two or three days. (The patient lives with two roommates who are both out of town for the holidays. No clear timeline of events prior to admission has been established.) He was in rough physical shape, having eaten nothing, slept little if at all, and drunk water from the river Cam (which will make anybody sick who isn’t already).

He repeatably asked for ‘my notebook’, but none of the nurses was aware of a notebook. During an initial interview, the patient could speak of little else. “Where is my notebook?” “Who took my notebook?” “It will take me days to reproduce it. Please, where is it?” Although he was calm and did not appear to present any physical threat, there were times when he became accusatory and seemed to feel persecuted. “I had the notebook in the car. What did you do with it?”

The doctor agreed to look into finding the notebook if he would answer some questions, and this meeting of minds elicited a stretch of slightly better cooperation, albeit infused with further queries and comments about the notebook.

“Do you understand why you are here?”

“Yeah, the porter brought me here. Does he have my notebook? Is it in his car?”

“Can you help me understand what you were doing when the porter found you?”

“Minding my own business, writing in my notebook, which somebody has taken.”

That sort of thing. These replies were at least somewhat responsive to the question being asked…an improvement.

It transpired that the notebook in question contained notes about a formulation of quantum theory called ‘Continuous Spontaneous Localization’. The patient had been trying to elaborate the (somewhat obscure) mathematics behind this new proposal, the theory of stochastic calculus. The patient reported working on the notebook for about a week, initially alone in his apartment, the last two to three days outdoors.

Within twenty-four hours, the patient’s physical health was more or less fine, and he was transferred to Fulbourn for full psychiatric evaluation. After a couple of days there, he had become despondent about the notebook. It was gone. His mood was low. He despaired about reproducing its most helpful and insightful pages. It was a daunting task. A nurse asked whether he would like a new notebook. “No, it’s probably hopeless.”

The patient was diagnosed with manic depression (these days, ‘bipolar disorder’). Medication followed.

from the Library of Congress, taken from a 19th century edition of Shakespeare

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That patient was me, around thirty years ago. (The quotations are, of course, at best approximate. Something like that kind of talking happened.) In the interest of openness, albeit at the risk of prompting you to dismiss me outright as ‘still unhinged thirty years later’, I will mention a residual annoyance at having never gotten the notebook back, even if (eventually) reproducing its most important contents (as best one could) was, grudgingly, a valuable exercise.

During the interviews, I never let on to any kind of hallucination. (By then, hallucinating music had been a common experience for me for at least 7 years, and one that I had even come to accept and handle reasonably well. I had never directly told anybody about it, and I wasn’t about to start with anonymous doctors who never were able (or willing?) to return my notebook.) In other words, the doctors did not have all of the info and I knew that they didn’t. (In fact, although I was outwardly cooperative, I revealed as little as possible to them. I cannot say, of course, what they might have inferred without being told.) I also felt confident that I had never been clinically depressed. I said as much to the doctors and nurses, but to no avail. (On the other hand, it was difficult to deny that something like mania had occurred.) I was ‘manic depressive’. It said so right there on my chart, and so that was that. I presumed the diagnosis to be wrong, and never seriously considered otherwise; therefore, whatever ‘treatments’ were being offered held no attraction.

So why, decades later, did I finally, after many conversations with my psychiatrist at the time (he is now retired), accept ‘schizophrenia’ as a diagnosis? That diagnosis had itself been suggested long before (once hallucination, and some delusion-like experiences, had become known to others). I had rejected it just as I had rejected the initial diagnosis.

My money and mouth were in the same place—without that diagnosis (which I asked my doctor not to file with the insurance company, despite his confidence), I had to pay for services that otherwise would have been (partially) covered by insurance. I’m not a rich man (by American standards) and I don’t love money, but I don’t just throw it away either. Rejection of the label was earnest.

The main reason that I eventually accepted it is that my psychiatrist at the time was willing to listen to my concerns. I explained to him why I felt that schizophrenia is “not a natural kind.” (That’s the sort of thing that philosophers say. I still believe it.) Rather than dismiss my reasonings as ‘mad’, he listened. I knew that he was listening because he responded with questions and relevant reasons of his own. We were having a genuine philosophical conversation.

(In retrospect, I am very impressed with him. He made himself vulnerable, in a sense, implicitly agreeing to engage philosophically with a professional philosopher rather than just asserting his own professional authority.)

We came to an accord. I’ll skip the argumentation that led to it—it isn’t relevant here (maybe another time)—because the important point is that he was clearly listening to me and responding to me as a human being rather than as a ‘patient’. (I was both, of course, but constantly reminding a human being that he is also a patient is counterproductive for everybody.) The details of our agreement aren’t crucial here, but the gist of it is that the term ‘schizophrenia’ is (as Awais Aftab has said of DSM diagnoses in general), “descriptive in nature.” Psychiatric terms, writes Aftab, denote “observable and reportable patterns of experiences and behaviours.” (Aftab adds that we are talking about experiences and behaviors that “cause distress or impairment,” which is a matter I leave to another occasion, not because I disagree but because that aspect of it is philosophically and pragmatically very thorny.)

So yeah, the patient ‘is schizophrenic,’ (or, ‘has schizophrenia’, or ‘is a person with schizophrenia’—some people place a lot of weight on these distinctions; I do not). Why am I now, more or less, amenable (I cannot say ‘comfortable’) saying so? In part because it is ‘just a description’ of experiences and behaviors (and they are real), and in part because the person whom I first permitted to apply this label treated me as an equal.