Mental illness, euphemisms and stigma by committee

Sensory overload

Since mental illness has been one of the national topics lately, for all the wrong reasons, I thought I would finally write about an issue that has bothered me for a long time. I’m both bipolar and autistic (won a double in the brain disorder lottery) so I’ve spent more than my fair share of time dealing with mental health professionals and trying to navigate a medical system that doesn’t always feel entirely safe. In addition to fears about mainstream biases, the language used to describe mental illness can be very problematic in medical settings and can even interfere with care in some cases. This is where the euphemisms come in.

At some point in the last 20 to 30 years, someone somewhere decided to start renaming “mental health” to “behavioral health”. I really don’t know where the term comes from, or why anyone thought such a name change was necessary, but it has all the trappings of an understatement that a committee would find for known reasons only committees. The term is not universal, but many large organizations and medical professionals now use it. When I first noticed that the mental health clinic I was using had turned into a behavioral health clinic, I didn’t like it. At all. But I tried to put it aside as one of my many ruminations on ultimately unimportant matters. That is, until an incident with a neurologist put things right.

I was visiting a neurologist for a problem unrelated to bipolar or autism and he started with a review of my medications after I gave a brief summary of the problem. It was then that he asked me if any of my medications were prescribed for epilepsy or a “behavioral problem”. Behavior problem. That is to say, bipolar, because some of the drugs used to treat epilepsy have also been shown to be very helpful in treating bipolar people. You’re probably starting to realize what the language problem is now, if you haven’t already guessed.

My disease is a disease. It is not a behavior that I have the power to change or something that can be driven by me. It’s not something I caused or something that will go away if I make better life choices. I’m not a kid throwing a tantrum in line. We don’t call bone fractures “bone behaviors.” Heart attacks are not “cardiac behaviors”. Epilepsy is not a “convulsive behavior”. Why should mental illnesses be classified as behaviors when other medical conditions are not?

I’m not going to pretend that the behaviors don’t go hand in hand with bipolar, because they do, but those are symptoms, not the disease itself. Some behaviors are extremely negative, but that’s not all. I have bipolar type 2, which means I have hypomanic episodes instead of full mania. It’s like mania-lite. Most of my episodes are also mixed bipolar, meaning I have features of mania and depression simultaneously. Sometimes this manifests as extreme restlessness and excessive energy as well as a generally depressed mood and sometimes I can have dramatic and sudden mood swings. I can go from a beautiful day to the brink of suicide in an instant. I had to put myself down more than once, reminding myself that it will pass, which always happens. When I have episodes, whether hypomanic, depressive or mixed, it affects my family and those around me. But it also affects me personally. By calling a behavior bipolar, the implication is that the reason for the treatment is to stop the behavior. To put an end to the things I do that bother others. My personal suffering, my inner state, is taken out of the equation. The treatment is no longer about me, but about what I do, or might do, to everyone. Imagine if people were told that their pneumonia would be treated because the constant cough bothered their roommates.

I was finally diagnosed on a hunch after years of trying to treat conditions that I don’t have. I can’t really blame psychiatrists because diagnosing mental illness isn’t easy and sometimes takes a lot of trial and error. In my case, my new doctor thought bipolar might be the problem after I mentioned that my chronic insomnia was always worse in the spring and fall. Apparently seasonal insomnia is sometimes a symptom of bipolar. So I started taking the drug as a test and my decades of battling insomnia came to an end. I also felt more comfortable in general. I didn’t feel like the drugs had changed me, but like everything else in the world was suddenly less intense. I was no longer subjected to a continuous punch in the face due to sensory overload. It was also a very difficult period because on the one hand the drugs were working very well. On the other hand, I had my own biases about bipolar and really didn’t want to be one of the those people. I was a little upset that the medication was working because it proved that I was one of those sneaky, unpredictable, insufferable bipolar people. I’ve come to accept this for myself, but I’ve always been sensitive about it because certainly other people, even medical professionals, have the same biases I once had. I usually have to disclose that I’m bipolar because meds are important and I can’t exactly claim that I have epilepsy. But it still scares me because I never know if my disorder will influence how the doctor thinks of me. Am I going to be taken seriously, or are they going to assume I’m exaggerating because that’s exactly what bipolar people do? I do not know. Knowing that medical professionals can double stigmatize me with their own terminology makes it even worse. There were times when I just left the drug and the diagnosis off the list because I felt the risk of stigma was worse than the risk of something going wrong by hiding it. The fear of having someone ask about my “behavioural problem” is sometimes too strong. I’m sure I’m not the only one.

So why am I talking about it now? Well, there is apparent agreement on a gun control bill that includes mental health provisions. Specifically, there are supposed to be new funds to expand access to mental health care. That’s great – more access is always better – but the reason for improving access is as offensive as the euphemistic “behavioral health”. Republicans are now willing to increase funding for mental health care not because people with illnesses deserve treatment, but because certain categories of illnesses are scary. Our behaviors (or imagined behaviors) frighten people, or at least upset them politically, and therefore need to be dealt with.

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