Why Is There No Place for Serious Mental Illness in Anti-Stigma Campaigns?

This is An Unquiet Mind, a National Magazine Award-winning monthly column by s.e. smith that explores disability identity and its interaction with the world at large.

All I wanted when I walked into the hospital that sunny afternoon, trees in bloom outside, was a little help with things. Things that felt like they were sliding out of control. The murmur of voices in my head. The drive to just stop, to not be anymore. What I got was humiliation.

When I arrived at triage, said the magic words (“mentally ill”, “thinking about hurting myself”), a nurse in purple scrubs led me into a beige room where everything was covered over, little locking plates blocking the light switch and the thermostat and other things in this room that had clearly been repurposed for this. A nurse watched as I undressed, and a guard watched beyond her, although he ducked his eyes away when I stood naked and she handed me a pile of plasticky scrubs, green and rustling, far too large for me, almost swallowing me up in their bulk. Rolling up the cuffs was futile; the slippery material just unwound itself.

The nurse took the bag of my belongings and I sat on the sole piece of furniture in the room, a large bench bolted to the floor and walls, to wait, door open to the rest of the bustling ER, guard standing awkwardly just outside. I had pleaded my case and been left with a book, which I leafed through as the hours waxed on and I waited for my psych consult, my hips beginning to hurt from the hard bench.

The nurse, meanwhile, was already calling around about beds.

I have a severe mental illness, something we crazy people sometimes call a “big scary.” It is the kind of diagnosis that makes people edge away when they hear it, that makes even mental health professionals sit up and take notice. Bipolar disorder, schizophrenia, schizoaffective disorder, borderline personality disorder, narcissistic personality disorder—all Big Scaries. Sometimes treatment-resistant major depression, too. Those of us who experience psychosis are viewed with particular fear and dread, as though at any moment we might become “psychotic,” dangerous, even though the people we most endanger are ourselves. These diagnoses are big and scary because society has told people they are—has told people we need to be well-managed, compliant patients in order to be seen as “healthy” and not terrifying.

But then, of course, having a well-managed mental illness turns someone with a Big Scary into “one of the good ones” because, surely, the logic follows, they must have a “mild form.” Not like those scary ones: The man on the corner who talks to himself, the woman screaming in the supermarket, the people sitting in the dayroom, rendered calm and slow like molasses by their medications. Surely, society tells itself, one of the good ones would never do that, never get “that bad.” We are the poster children. Look at us, so functional!

Under stress, the glaze on some pottery forms a network of hairline cracks, known as crazing. I find it rather beautiful, and I am not alone: Some glazing techniques deliberately cultivate crazing in the kiln, creating a fine, beautiful web that spreads across the glaze. In listings for old pottery that was not intended to be crazed, sellers will disclose what they see as damage: “Some crazing.” Sometimes that’s how I feel. Some crazing. Saddled with a Big Scary, but privileged to have access to the social support needed to manage it, keep it quiet and calm, most of the time. Some crazing.

The thing about Big Scaries is that they are often left out of “anti-stigma” campaigns, and when they’re included, the focus is sometimes on family-of, rather than the actual human beings who experience them. Such campaigns instead focus heavily on anxiety and depression—which can be very serious, disabling mental health conditions, and are, like others, wrapped in stigma—to the exclusion and sometimes to the detriment of the Big Scaries. Every time I see people “fighting stigma” by “speaking out” on social media, it’s a parade of anxiety and depression. Very real, heartfelt stories about very real consequences of living with mental illness, even these sometimes censored: Depression focused on inactivity, sadness, crying, anxiety rooted in nervousness, panic attacks, sometimes described in self-deprecating, cute ways designed to blunt the edges of the experience, to be more accessible. No awkward outbursts, no anger, no lashing out, no unfunny abyss. But the Big Scaries are nowhere to be seen. They are unwelcome. My psychosis, the several weeks in 2015 I spent thinking I had been swapped with someone else, with myself, is not wanted here. That’s too scary.

 Big Scaries...are often left out of “anti-stigma” campaigns, and when they’re included, the focus is sometimes on family-of, rather than the actual human beings who experience them.

There is some sense of relatability in anxiety and depression. Everyone has had bad days, sometimes a string of them, has felt grim, hemmed in, helpless. Everyone has had anxiety, perhaps around a big life event or a task they are dreading. When people talk about their anxiety and depression, they often tap into these things, stressing that what they experience is larger, more complicated, not finite. People are starting to talk more about hair pulling and skin picking, about the physical manifestations of some mental illnesses, but these things are still rooted in deeply internal, personal experiences of mental illness. The Big Scaries are often talked about in terms of their externalities, how we affect others with our craziness, not the feelings of shame and distress we experience.

None of this is to say that non-Big Scaries are lesser, not as important, not as debilitating. But they are not as stigmatized, and the cost of coming out is not as dangerous as it is for those with the Big Scaries. You may have heard that mentally ill people are more likely to be victims of violence, but have you ever stopped to wonder which mentally ill people?

The Big Scaries hide in the shadows. People do not talk about what it’s like to break with reality, to see things that aren’t there, to hear voices that no one else hears. People do not talk about psychosis. About how sometimes their mental health makes them reckless, cruel—that is, verboten, attributing negative behavior to mental illness. They do not talk about the humiliation and oppression of a mandatory hold, of feeling stripped of all autonomy by people who surround them, insisting this is for their own good. They do not talk about going inpatient, about how sometimes they wish for normality, for just a few hours, longing for a period of time where they could let their guard down and be someone else, someone who isn’t constantly evaluating their own behavior and second-guessing their every thought. These are not things we are supposed to talk about. They might perpetuate stigma, after all. This is not the normalization the anti-stigma crowd wants, deep down.

It is hard sometimes not to resent anxiety and depression as entities—not the people who experience them, but the growing social acceptance of the conditions themselves, the openness to conversations about them. Some might argue that the stigma campaigns hyper-focused on these conditions are paving the way to conversations about the Big Scaries, but I am skeptical. The Big Scaries will always remain scary because they are so saturated in externalities, in the effects some of us have on the world around us, but also in centuries of blaming madness for violence and hateful acts. To live with a Big Scary is to know, in a way, that the people around us are waiting for the other shoe to drop.

This is why reading texts like Esmé Weijun Wang’s The Collected Schizophrenias is such a revelation: It is possible to talk about these things, it is possible to dare the social consequences and the disablism. It is possible to write both frankly and beautifully about the experience of a Big Scary interwoven with chronic illness, and for your work to be critically acclaimed. Yet it is still dangerous: To be a high-profile person with schizoaffective disorder is to attract attention that is sometimes unwelcome, to have your own work weaponized against you, to be reminded, constantly, that everything you say and do is framed in terms of your mental illness.

Always, there is the lurking pressure: Some crazing.

All mentally ill people are expected to avoid inconveniencing the sane with their mental illnesses, to perform wellness, to retreat into the shadows when they are unwell and fix whatever is wrong. That pressure falls on the depressed and the manic alike, but it cuts differently for us, the Big Scaries, those who do not belong in awareness campaigns because we are too frightening, because talking about our lived experience is Too Much, because it can take months or years to “manage” an episode, because some of us reject treatment altogether, refusing to bend minds to society’s will.

Sometimes the things we have to say are ugly and contradict commonly accepted premises of mental health awareness. Sometimes our crazy makes us blow up everything around us, and that does not lend itself well to a hashtag “stop the stigma” tweet. In a world where it is still too dangerous for most of us to disclose our diagnoses and talk openly about our experiences—even when our words may reiterate stereotypes or frighten people—the fact that we continue to be excluded from anti-stigma campaigns points glaringly to the limits of imagination.

It is crushing to see your diagnosis treated as too toxic for even the most robust attempt at mental health normalization, to be left on the outside looking in, always looking in, hand on the glass, willing it to dissolve. To be welcomed into the big anti-stigma tent, the Big Scaries must be made . . . less frightening. We must not raise society to meet us, but instead lower ourselves to become nonthreatening. This attitude is a betrayal of humanity’s capacity for understanding, and a knife in the heart of people with Big Scaries.

Some crazing.

• 0