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The Mystery of the Undisclosed Diagnosis

  • Posted on November 12, 2014 at 10:00 AM

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

Questioning

  • Posted on October 9, 2010 at 3:21 AM

Next week I’ll be addressing the issue of bullying.  I’ve been meaning to do so for weeks, but it’s a complicated and an emotional topic.  So I’ve put it off.

Today, I’ll be putting it off one more time.  Earlier this week I spoke to a counselor regarding a matter I’m not going to discuss.  However, in the process of this discussion the topic of bi-polar disorder came up—in relation to me, not my husband.  I got from this discussion a referral to a psychiatrist, who I saw today.

Fifteen minutes into the conversation the psychiatrist was convinced I was not bi-polar.  In going through her notes and the referral, she determined that a likely point of confusion was my use of “cyclical” to describe my depression.  I used cyclical, because I experience depression in semi-predictable cycles throughout the year.  My depression follows a pattern that allows me to recognize when I’m getting depressed, know that I’ll get un-depressed, and recognize when I’m coming out of the depression.  To me, that implies a cycle. 

Apparently, cyclical means something else to psychologists and psychiatrists.  It means seasonal affective disorder, manic-depression, and other disorders that involve a cycle.  But, unless the cycle of depression is attached to seasonal differences, cyclical depression is not recognized as such—they call it recurrent depression instead.

Thus, the interpretations of the experiences I describe can hinge on a single word.

In discussing what I do with the psychiatrist, I also asked if she was familiar with neurodiversity.  She’d heard about it; she’d read about it.  But her interpretation of whatever she’d read was that neurodiversity was anti-psychology and anti-psychiatry.  Admittedly, some people within the greater neurodiversity community are anti-psychology and anti-psychiatry; but I don’t think that reflects the movement as a whole.

What I think the movement does reflect, however, is the willingness to question the authority and expertise of medical professionals.  I’ve encountered some psychologists who regard this as a personal threat or a personal attack and I’ve encountered some psychologists who welcome the scrutiny.  However, in my limited experience, those who resent it seem to dominate the profession.

Personally, I think it’s important to question all of those in authority, not just those in the medical profession.  Not to do so obstinately or just for the sake of being uncooperative, but to do so because human beings—all human beings—are fallible and so are human constructs, including science (and, yes, religions, too).  We are fallible.  Our authority figures and experts are fallible.  And, unless we’re willing to acknowledge that and question beliefs (including our own), we’re going to be stuck with badness—bad science, bad religion, bad societies.

Luckily, I’m familiar enough with both myself and bi-polar disorder that I was highly skeptical of this hypothesis.  I brought that skepticism with me to my appointment today, and found a doctor who was willing to listen.  That’s good.  But I can imagine a situation where expressions of skepticism are unlikely or where the doctor isn’t willing to listen.  I know both happen.  And on such a small thing as two different interpretations of a word a wrong diagnosis can be made when all other evidence indicates that the diagnosis is wrong.

And we’re not supposed to question that?  I just can’t buy that.