Illness Isn’t A Performance

I’m tired of performing my illness.

If you have a chronic illness or a disability (physical or mental) you may be nodding right now. If you’re able bodied and neurotypical, you may be puzzled. What the hell does it mean to “Perform an Illness?”

Maybe I should have led with, “I’m tired of the need to perform illness.” Because it’s not just me. It seems like this past week I’ve seen an unusual number of articles, blog posts, and tweets about performing illness, from this discussion of what constitutes a “real” migraine to my friend being told she doesn’t “Look Sick” (a classic), to a couple of people writing about how tired they are of curating media presence in order to appear to be “doing” their illness “right.”

I’m not the first person to write on this topic. I have no doubt I will not be the last. If you’re here, you probably have some interest in what I have to say, or are at least curious. So here’s my 2 p.

First off, for latecomers to the discussion:  What does it mean to “perform” an illness?

Simply put, performing an illness is aligning the way you present as a chronically ill person with the expectations of somebody who is not yourself. It can also be aligning your presentation to conform to the expectations of a group you’re part of. (I’ll be addressing this eventually, probably in a different blog post.) What your performance looks like depends on context, and it may be affected by things like the identity of the individual or group as well as your own reasons for performing. It might look like moaning a little when you’re enduring a migraine so your partner understands they can’t expect you to cook dinner. Even people whose illnesses aren’t chronic may do it, exaggerating hoarseness and sniffles over the phone so the boss believes it when they call in sick.

The need to perform illness always stems from ableism, whether internal or external. Part of any privilege is the tendency of people with more power to define people with less. Thus, you get white people defining what it means to be Black, thin people defining what it means to be fat, and able people defining what it means to be sick and/or disabled. These definitions are invariably rooted in stereotypes, because they’re created by people who are outside the communities they presume to address.

Applying stereotypes to living, breathing human beings is always damaging, but a unique aspect of the stereotypes about illness is that ill and disabled people can sometimes find benefit in “playing to” them. The stereotype of, for example, fat people as lazy, overindulgent, ignorant of the benefits of “healthy” food, and a drain on resources is overwhelmingly negative. A fat person can alleviate some of the negativity of the stereotype by “playing to” a slightly different one, the “Good Fatty,” i.e., a fat person actively engaged in not being fat through exercise, adopting “healthy” eating habits, undergoing surgery, or a combination. In the case of the ill or disabled person, performing illness to suit preconceived notions of what it looks like usually has results that appear positive. You can gain sympathy, for example, or simply get a rest from having the validity of your illness questioned. The flip side is that failing to perform your illness in a way that fits the stereotype can result in negative consequences. A person who lays aside a needed mobility aid for a short period of time may encounter hateful judgments about whether or not they’re pretending to be ill. Likewise, a person needing accommodation in the workplace may be deprived of it if they don’t need it every single time, or a person with a mental illness may be accused of faking it unless they consistently act irrational, depressed, or whatever other way is considered normative for the illness.

To make matters worse, even people who should know better, like doctors and advocates, can practice ableism when they adhere dogmatically to diagnostic criteria. “Official” designations in the DSM and other resources might be helpful in determining what code will persuade an insurance company to approve treatment (and the need to gain approval from people whose main concern is cost rather than health comes with its own set of problems). However, when dealing with real people, it’s important to remember the experience of illness rarely goes by the book. Some symptoms may be common; others less so. Some diseases manifest differently in different people, or have different forms. We don’t know everything there is to know about illness, whether physical or mental. New syndromes are being identified all the time. The best way to determine whether a person is sick and/or disabled is to listen to that person. Of course, this often doesn’t happen. The Western world has an almost pathological fear of being taken advantage of, of people getting things they “don’t deserve,” and this plays out in its treatment of sick and disabled people.

Here’s an example from my personal experience: A number of years back, during a major depressive episode, it occurred to me that I suffered a real mental illness that prevented me from engaging in the world in a lot of ways, and I might qualify for disability support.

I need to pause here to say that writing the last sentence triggered a LOT of anger in me, for a LOT of reasons. I started experiencing symptoms of depression and bipolar disorder in early adolescence. I developed an eating disorder so severe I almost died from it, and doctors told my parents at least once that I know of that I had a mental illness so severe I “would never be able to take care of” myself [whatever that meant]. Yet the reality of my illness didn’t sink in until I was past forty. I don’t think this is due to the illness, itself. I knew at a young age that something odd was going on in my brain and I begged for treatment. But Western culture is so ableist that it actively encourages sick people to ignore their experience when it prevents them from conforming to expectations. You can see this in every television commercial for cold medicine where a miserable, coughing, sneezing, feverish person downs a magic elixir or pops a couple pills and goes right back to the grind, symptoms relieved. I cannot understand why this is promoted as positive behavior. It doesn’t serve people; it serves employers who can’t be bothered to treat workers as human beings. There may be times when it’s absolutely vital to attend a meeting or intervene in a crisis despite illness, but in all honesty, those times are few and far between.

Anyway. I decided to apply for disability. The process of doing this in the US is horrendous. It’s based on that pathological fear of people getting something for “nothing,” and the powers that be require sick people to jump through a lot of hoops to prove they’re really sick (unless you’re on your death bed; I have a few friends who were granted disability pretty fast when they were not expected to live more than a few months).

I filled out the on line application and it was denied. I learned later that applications are pretty much routinely denied, as a way to sort out those who are “really serious” about pursuing the matter from those who apply on a whim. Since the application is long and difficult to complete in the first place, that seems excessive, but that’s the way it works. I appealed. The appeals process stretched out over two years. It involved gathering documentation from every conceivable source, going back for ten years. Every doctor I’d seen in that time had to provide a statement. My therapist recommended a good lawyer. Without him, I never would have gotten through the appeal. Even with his help, I was tempted to give up more than once.

Because of ableist attitudes, my doctors disagreed as to whether or not my illness constituted a disability. Those who knew me best asserted that it did. Others, who’d seen me rarely or only on good days, said it didn’t. My psychiatrist at the time proved the biggest stumbling block, because despite the facts that I’d never been able to participate in a “normal” job more than eighteen months, had never worked full time at all, and participating in standard workplace environments made me verifiably psychotic and suicidal, he claimed I could handle a job if I “really wanted to.” That is, because I didn’t present as irrational during my meds checks (fifteen minutes once every couple months, the only time he saw me), I was not disabled.

I had to have a hearing before a judge and a panel of experts. My lawyer advised me to let my hair grow out, not to care for my appearance, and to show up in sweatpants. That is, I had to perform my disability right. Putting on what I considered the appropriate clothes to appear before a judge would have been a mark against me. Breaking down in tears during the hearing was a plus. The fact that I’d managed to graduate college was a minus, because people with severe mental illnesses don’t complete college. Etcetera.

In the end, the judge decided in my favor. At this point, some readers may be angry because I “gamed the system.” I’m angry because the system as it is required gaming for me to get my needs met. At the same time as I was going through all this, a friend in the UK was suffering a major depressive episode, too. She went to her doctor, told him what she was going through, and he gave her a slip of paper saying she needed disability support because she couldn’t work due to her mental condition. That was IT.

My experience is one example of the need to perform illness for the able. The consequences of requiring sick and disabled people to perform stretch much further and have an extreme negative impact on our lives. They’ll continue to do so as long as able people are the ones defining disability. One thing I notice a lot is how much the very idea of disability, at least in the US, depends on the normalization of unhealthy aspects of capitalist/corporate culture, like quelling your symptoms with cold medicine so you can go back to work. The idea is, if there’s any way at all you CAN conform, then you’re not considered disabled, no matter how much physical or mental distress you might be in. In this culture, the only way to “earn a living” (in itself a horrific concept) is to work at a paying “job.” Yet jobs providing a steady source of income take limited forms. Even with accommodation, many with chronic physical and mental illness cannot participate in these forms. We may be suited to other work where remuneration is less automatic (or doesn’t exist at all). But there’s always the fear that if you make too much noise about this other work, you’ll sacrifice the support systems that allow you to do it at all.

Here’s another personal example: I’m an author. I’ve published six books in my Caitlin Ross series (gratuitous promo: check out a sample!) As a self-publisher, I do virtually all the work on every book myself. I do the formatting, the interior design, and the editing, in addition to writing the numerous drafts of every volume. Some days I work twelve hours at a stretch. Other days, I can’t work at all due to one or another of my illnesses.

I’m not independently wealthy. The ONLY reason I can engage in my career is my disability (well, that an an understanding partner). The extra $400 a month (yep, that’s all) and the insurance covering my medications assuages the guilt of not “earning a living” enough so that I can focus on writing. Yes, some (most) authors work at full time paying jobs aside from writing. I cannot do this. Working at a job-job takes so much out of me that I simply cannot do anything else. I wish I didn’t have to explain this every time, but I feel like I do because of voices both internal and external that scream “BUT SO-AND-SO WROTE [Bestseller[ WHILE WORKING 12-HOUR SHIFTS AT WALMART; WHY CAN’T YOU?”

Anyway. I live in fear that some government official will see those six novels, or get wind of the days I work a lot, and decide, “If she can do that, she can go get a job at the gas station down the street,” and cut my disability. Because in the mind of an able person, time is time and effort is effort, and what’s the big deal? Even my last therapist made cracks about “people on disability hanging out scribbling in the coffee shop instead of doing something productive,” as if the ability to do one is the same as the ability to do the other. Sick and disabled people are constantly walking this tightrope between performing the disability well enough to be believed and maintaining quality of life, because to able people having any quality of life at all is a privilege to which they alone can aspire.

Really, as far as I can see, the only way of doing away with the need to perform illness is to redefine society’s relationship to it and make room for people to live their lives in the best way they can. It would require a sea change in our relationship to the very concepts of ability and disability, and it would start with listening to sick and disabled people and believing what they say about their experience.

I suppose that’s too much to hope for, but I can dream.