But it is Embarrassing

A few weeks ago, a friend told me about the latest way to purchase a stake in the Destigmatizing Mental Illness economy: custom-made “wear your med” buttons and pins, to let everybody know what pills you (or a loved one) takes to stay sane. As FastCompany reports:

Attached to a backpack or a jacket, these simple new buttons aren’t easily recognizable; on a plain blue background, a tiny pink pill just says “G221-300.” But it’s clear that it’s medication, and for those who wear it, it’s meant to start a conversation. The button, which depicts lithium, is one of a set of buttons that each show a different medication for mental illness. Some of the pills are stamped with their names, like Xanax or Wellbutrin. For the wearer, it’s a way to signal an openness to talk about mental health.

The buttons are a subtler version of [the creator’s] own activism. “I know that not everybody wants to be an activist about mental health,” she says. “With something like the buttons, I think it’s a little more accessible for people who maybe are open to sharing their story, but don’t want to be shouting about it on the streets. They can have this button, and it’s an easy way for people to see it and maybe ask about it.” A second button, with the message “wear your meds,” gives people the opportunity to be more explicit about the intent of the buttons.

I suppose it won’t surprise you to learn that I find this incredibly obnoxious. Even the name is cloying: “Wear your meds!”. It feels like the worst kind of meeting between the market’s incessant desire to sell you “activism” in the form of consumer products and a certain kind of striver’s incessant inability to conceive of activism as anything other than an exercise in individual visibility promotion and personal branding. I told my friend that I would be more embarrassed to wear one of these than I’ve ever been about being ill, but in the days that’ve followed, I’ve realized that isn’t true. The reason I hate these buttons isn’t really the buttons themselves. They’re harmless at bottom, like a band t-shirt, and if they really do help somebody fight “stigma” and seek treatment, that’s lovely. The reason I hate them is because mental illness is embarrassing, and I am embarrassed by it, and as time goes on, I am more and more resentful of the proposition that destigmatizing insanity must go beyond the necessary work of getting people to openly seek help when they need it, and become, in effect, a campaign to remake mental illness into a social identity to be worn with pride.

I think that the central confusion animating much of the “you shouldn’t be ashamed!” rhetoric that I see comes from a bizarre conflation of embarrassment and guilt. Every time I have been told that I shouldn’t be ashamed of my illness, what I’m actually being told is that being ill isn’t my fault. I didn’t choose to be sick, and the symptoms of my illness—particularly before I went on medication—were and are beyond my control. So I shouldn’t be any more embarrassed by it than I would be about a physical disability resulting from a birth defect, or about an unattractive facial feature, or about sneezing at an inopportune moment. But what, precisely, does fault have to do with shame? Transgression and moral failure can and often do embarrass those of us with a working conscience, but they’re hardly the only category of thing that can cause embarrassment. It’s embarrassing to fart loudly in public. It’s embarrassing to accidentally call your doctor “mom”. It’s embarrassing to show up for your first day of classes and sit down and take out your notebook and pen and then, fifteen minutes into the period, look at the syllabus which just got handed out and realize that thanks to some completely understandable confusion, you’ve accidentally come to the wrong room and now you have to awkwardly say something, and leave, and then explain yourself when you finally get to the classroom you were meant to be in in the first place. None of these things are “your fault”, but none of them come with a sermon about how you really shouldn’t stigmatize yourself for feeling silly when they happen.

Around six months ago, I began to notice a stiffness in my legs. A few days later, I started feeling twitchy—like I had always had too much caffeine. A few days after that, my left arm started acting up. At first I was just having trouble keeping it still, but then it began to move and shake, my first began to clench and unclench at random, my fingers wiggled on their own, sometimes for hours at a time. I panicked, called my doctor, and went to see him a few days later. It turned out that I’d developed a form of dyskinesia, which is an unusual but not terribly rare side-effect of my antipsychotic medication. Luckily, my particular case isn’t as bad as it could be, and it responds well to a low dose of the Parkinson’s medication benztropine. But even though I don’t believe “your medication is interfering with the ordinary function of your dopamine system” is a fact for which I bear moral responsibility, I didn’t go back to class until my arm went back to normal. I didn’t want people to see me like that. It was embarrassing. Despite the medication, my legs still feel a little stiff most days, and on bad days, I walk with a kind of halting lilt now. I’m embarrassed by that. Of course I am. It’s embarrassing. Telling me that it isn’t my fault won’t change the fact that I’d prefer people not see me do this stupid shuffle. Why would it?

The more that “don’t be ashamed!” rhetoric goes mainstream and the more that we are all meant to shout our illnesses and wear our meds and convert our disorders into unique perspectives for public branding purposes, the more I notice mentally ill people in online support groups, and in my personal life, expressing shame not about their illnesses, but about the fact that they still often feel ashamed of them. They feel like they’re letting down the cause, or suffering from some form of “internalized stigma”, or just wearing out the people around them with self-pity. They feel acutely aware (and I have felt acutely aware) of the pernicious way that being Open about their illness with Understanding people can erode those relationships and friendships. You’re open because you’ve been told to be open. Because the people around you are always checking in. But you often have the same complaints, are stuck in the same holes, are depressing or tiring or weird in the same ways — that’s the nature of illness — and you know that no matter what all those Understanding People say, it’s depressing and tiring and weird to talk to depressed and tiring and weird people. And you know that the people listening to you quite naturally get sick of it. And you know that they know that they’re not supposed to get sick of it—they’re supposed to be open and understanding and anti-stigma. And you know that nothing breeds resentment like the tension between something unpleasant, and the feeling that you’re obligated to keep subjecting yourself to that unpleasantness. That too is embarrassing, even before the meltdowns and relapses and other crises which invariably end with the patient surveying the wreckage of their latest episode and trying to make a list of who deserves an apology. Embarrassment isn’t the same as guilt, but every ill person I know feels guilty about the ways they’ve inconvenienced and bothered and hurt the people around them too, and nothing breeds resentment like the friend who feels morally obliged to reject your apology because after all, it’s Not Your Fault, and if they let you believe that yes, you hurt them, even if you didn’t mean to, then somehow they’re stigmatizing you.

I suppose what I’m trying to tell you is that one way to make people feel embarrassed or ashamed of their illness is to tell them that they shouldn’t ever feel embarrassed or ashamed. One of the perennial tasks of moral life is learning to accept that deliberate malice is not the only way to bother other people; that there’s something childish in saying Well I didn’t mean to, so it’s not my fault when somebody says Hey, you hurt me. But another task is accepting that some things are embarrassing, even if nobody gets hurt and it’s nobody’s fault. It’s accepting that you will feel embarrassed sometimes, and that feeling embarrassed isn’t a political failure; it’s evidence that you care about other people and their opinion of you. Only the worst kind of narcissist can’t ever stand to feel ashamed. Only the worst kind of childish striver must develop an elaborate socio-political framework for explaining why nothing is their fault, and actually it’s brave to feel good and prideful all the time, and actually, if you say otherwise, you’re abusing them.

It’s not a coincidence that nearly every mentally ill person that I know takes a long time to admit—even to their loved ones—that they’re ill. It’s not a coincidence that they often don’t want to admit it to themselves, that they wish it would just go away, that they want, more than anything, to live as if there was nothing wrong at all. Mental illness is a problem, and it’s humiliating to have problems, especially the kinds you can’t control. If “wearing your meds” helps, then God bless you. But let me offer a little destigmatizing of my own: it’s fine to wish you didn’t have a problem. It’s fine to be embarrassed when its sillier and stranger and even its more menacing symptoms appear in public view. It’s fine to resent it. Not everything has to be part of an inspiring self-acceptance and self-actualization story. Activism doesn’t require you to be a billboard; if you want to be active, go volunteer to work at a mental health clinic, or with veterans, or with sick people transitioning back from the hospital or jail. Maybe the personal is political, but not all politics are a matter of personal performance. It’s fine to just say this sucks. And it’s fine to say I hate it. And it’s fine not to tell anyone, and to take your meds in secret, and to acknowledge that all of this really does make it harder, and would even in a world of perfect Openness and Understanding. It’s fine to say no, I’m sorry, it’s not a political or moral failure to feel humiliated sometimes—it’s just a sign you’re human. I don’t want to spend $29.99 to Do My Part and wear my pins and tell everybody know about the worst part of my life. I’ll keep my embarrassment and shame, and on bad days, I’ll try to do my stupid shuffling halting walk when as few people as possible are looking.