When mental health professionals systemically misdiagnose patients of color, treatment looks more like punishment
I first bought pale blue note paper because that’s the kind Franny Glass used before she had her breakdown, and then, because the pale blue sheets were pulpy, notebooks, small notebooks, multiple notebooks, one in each bag. What ends up working best is a sheet of paper. You landscape-orient it and draw four lines down to create five columns. The first column you title Trigger and the last Evidence to the Contrary. This is called an intrusive thought chart, a cognitive behavioral therapy (CBT) technique for people with obsessive-compulsive disorder that leans towards the O end of OCD. There are three other columns in between the thing that made your heart (what a guy) outdo itself beating (“trigger”), and the last step, where your frontal lobe has become engaged enough to help you embrace the mathematical probability of your fears coming true (“evidence to the contrary”), and if you don’t know what those columns are, you cannot ever truly understand. That is okay.
I briefly saw a psychotherapist in college, an Argentine woman in Boston whose clients, she claimed, included children of the disappeared. She pointed out some things about my childhood that I believed to be low-hanging fruit, tidy close readings of my life as if she had read about me in a global lit syllabus, and I stopped seeing her. I was twenty-one when I arrived in New Haven to start my doctorate. I went to the Yale mental health department maybe twice before I was diagnosed as bipolar and then the doctor went on maternity leave. I did not then, nor have I ever, shown any manic symptoms. I protested the diagnosis, but the new doctor assigned to me, a white woman in her thirties with an ugly bob and an enormous diamond engagement ring she played with while we talked, dismissed me by suggesting I was perhaps bipolar II, or atypical bipolar, or maybe even “the kind of bipolar that hasn’t even been named yet.” It was the kind of oratorical checkmate I had become used to in the classroom, so I demurred.
A few months ago, I counted for the first time. Since starting treatment at my school’s mental health department, in 2011, I have been prescribed at least 16 different kinds of psychiatric medications, many of them at the same time. I have no memory of the worst parts of this period, so this past winter I reconstructed some of it through conversations with friends and the bottomless archives of Gmail, which saved every one of my long e-mails to friends, a hypersaline genre all its own of tears, tears, tears.
My diagnosis was a heavy thing to carry, tolerable only when I thought of other people who have shared it. There are corners of the Internet dedicated to their shrines: Robert Lowell, Van Gogh, Kurt Cobain, Jackson Pollock, Edgar Allen Poe, Lou Reed, Tennessee Williams. The women writers whose disease always make their mention into back jacket bios: Sylvia Plath, Elise Cowen, Virginia Woolf, Dorothy Parker, Anne Sexton, Sarah Kane, Sara Teasdale. In 1978, Susan Sontag wrote about the role tuberculosis played in the 19th century in her essay “Illness as Metaphor,” describing the tubercular patient as “sensitive, creative, a being apart.” The twenty-first century has its renditions. Kay Redfield Jamison, the clinical psychologist who wrote the foundational An Unquiet Mind about her own struggle with bipolar disorder also published a book called Touched with Fire: Manic-Depressive Illness and the Artistic Temperament. I bought a used copy off Amazon.
I had always had an affinity for the confessional poets anyway and so we found ourselves here (the honor’s all mine, Ms. Sexton). I was aware of the tropes. Still, I wrote something about depression that year, and loads of kids sent me messages saying I made them feel less alone. That felt good. I felt like I was handed a cultural script, and I, whose one teenage rebellion had been against scripts, any kind, embraced it because for the very first time in my young life it was tied to creativity, not race, or class, or immigration status. But it does things to you to be told you are that kind of mentally ill at twenty-one years old.
One time, I almost died. My doctor had me on some meds that interacted dangerously with the wisdom tooth pain medicine I had recently taken and she knew I was on and I lost consciousness and vomited blood outside a lecture hall. My roommate took me to the ER despite the doctor on call reassuring him that I could stay at home so long as he made sure I didn’t slip into a coma. If you haven’t had your life saved by a hell-raising gay man running red lights with a beagle named after the senior United States Senator from Minnesota in the backseat, it is a fine experience, five stars, would do again.
I do not think my doctor was trying to kill me. It recently occurred to me that my race and class and gender had something to do with the whole thing, and of course it did, but I wasn’t sure how. I truly believe she felt committed to “first, do no harm” but misunderstood how to implement it, largely because of my race and class and gender. Literature about the palliative care movement, that is, treatment to address physical pain, reveals that pain is often treated haphazardly if at all among the poor and mentally ill because pain alone cannot be measured by a blood test or ultrasound, it needs to be communicated through some mix of words and performance and both requires the physician to need to “believe” that the pain is “real.” Practitioners within the palliative care movement struggle with the question of how to treat it effectively and humanely. A 2007 paper in the journal Anaesthesia & Analgesia contained the line: “the unreasonable failure to treat pain is poor medicine, unethical practice, and abrogation of a fundamental human right.” One of its co-authors later complained that doctors took these words to mean that access to narcotics was a human right, rather than access to competent treatment.
I came to my doctor with pain. I presented her with symptoms I now know are textbook-case obsessive and compulsive, protective responses to some heavy post-traumatic stress from childhood abandonment, though I’ll shy away from acronyms because my beloved therapist from last year, the man who returned me to myself, shies away from diagnostic labels. A small thing can potentially release in me an oil-spill feeling of panic; thorny, bristling obsessive fears stick to my insides like smog and molasses and cilia until I do something about them over and over and over and over and over — the compulsions. When I was a child, my fears were rape, or blasphemy, or AIDS, and now it is another thing that I won’t tell you. Crowds and noise and bright lights can make my lungs feel sudden atrophy. I know that as a panic attack now, but at the time my symptoms were coronary, pulmonary, limbic. I believe she wanted to help soothe my pain, but she didn’t know how.
So she sedated the hell out of me.
And she sedated the hell out of me because of the things you might gather from reading the name in this byline.
A person of color is much more likely to be diagnosed with a more severe diagnosis than a white one. The Washington Post reports that black people are four times more likely to be diagnosed as schizophrenic than white people, Latino/as three times more likely. Schizophrenia is believed to afflict all those groups at about the same rate, but perhaps this knowledge hasn’t been around for long enough to have made an impression. In the sixties, the National Institute of Mental Health found that “blacks have a 65% higher rate of schizophrenia than whites,” staggering and untrue.
This might seem surprising because of the discourse that surrounds us after mass shootings: black men who kill are criminals, brown men who kill are terrorists, white men who kill are mentally ill. Mental illness in this scenario is privilege and exoneration. When I say that people of color experience overdiagnosis, I want to make clear that this concerns diseases that are coded for violence, threat, and danger — like schizophrenia — not for depression and anxiety, which are believed to be inherent to our experiences. Of course we’re sad, who wouldn’t be? Extending to us the privilege of a discussion of our serotonin levels is one answer, but the problem is bigger than the diagnosis. It has to do with treatment. It has to do with punishment that does not fit the crime. It has to do with men and women in uniforms, whether white or blue, thinking somehow that our blood’s not red like theirs.
Prescribing a hurting kid harmful levels of an antipsychotic, like I was, is excessive punishment; brutal force outside the police force is brutal force nonetheless. There were times when I too could not breathe. My doctor told me to get an inhaler. I slurred my words. I passed out in coffee shops. I lost my wit. My vision became blurry and I could not see the words I had typed on my computer screen. She told me to get glasses.
I want to go back to the point about pain being inherent to the lives of people of color. Black and brown bodies have historically been regarded as impervious to pain — and innocence, as Robin Bernstein has argued. Thurgood Marshall’s famed doll experiment during the Brown v. Board of Education deliberations revealed that even black children associated the black baby dolls with “bad.” White children with appendicitis are more likely to receive pain medication than black kids crying from the same pain. An Emory University study from 2000 observed that 74% of white patients with bone fractures in an Atlanta hospital received painkillers, whereas only 50% of black patients did.
We can get to the neurochemical and the existential and the metaphysical at another time; for now, the dark matter of our skin and blood. A study done at the University of Virginia among groups of white medical students and researchers found that 40% of first-year and second-year medical students believed that the skin of black people “is thicker than whites.” They believed black people had less sensitive nerve endings, that their blood coagulates more quickly. I always hear people marvel at how hard and rough and long immigrants can work without complaining, doing the jobs Americans can’t or won’t do. In 1969, César Chávez and the United Farm Workers brought several farm workers to address Congress about widespread pesticide poisoning in their communities — they spoke of headaches, nausea, seizures, nosebleeds, chronic skin conditions, and alarmingly low cholinesterase and high organocholorine pesticide levels in the blood of their children. Public health officials thought migrant bodies were too tough to be poisoned so they blamed it on personal hygiene. Only after the UFW embarked on a campaign to inform white middle-class consumers that pesticides might be in their produce did any “shared sense of physical vulnerability,” as Linda Nash has called it, take place. Sarah Ahmed calls the “melancholic migrant” a “ghostly figure, haunting contemporary culture as a kind of unnecessary and hurtful reminder of racism.” Her argument is more complicated than that, but you get it: I am a ghost, daughter of ghosts, and my trauma is here to haunt you.
Cornel West has spoken about “black sadness,” a state that cannot truly be shared by white people. While it is true that there are systemic, historical, familial, cultural, demographic, all sorts of reasons why I cannot ever truly empathize with a black person’s sadness and a white person cannot ever truly empathize with mine, or why I could not ever even truly empathize with my father’s, we need to draw the line somewhere, and the line needs to be drawn at where affect ends and mental illness begins. The complicated differences among experiences of affective terror among different racial groups are important, and I urge us all to explore them. But we encounter a problem when the social supplants the clinical, and “black sadness” supplants “clinical depression” and “melancholic migrant” supplants “post-traumatic stress disorder.” There are fundamental ways in which race and class play into access to care and a supportive environment for patients of mental illness, but to say that black men are schizophrenic in one kind of way and white men are schizophrenic in another kind of way, and we, observers, neutralized white, could not possibly understand the black man’s schizophrenia can be fatal. It can lead to a white schizophrenic man being talked down from an outburst and a black schizophrenic man shot down dead.
As a young person diagnosed with a mental illness, I searched for a community, and I found it among the crazy white writers that made me feel safe, because crazy brown people reminded me of home, and I had left home. We were up to the part of the movie where I took the bus away from the hood and I looked out the window, listening to Common, watching the landscape getting green and then greener.
My fantasy then was wrong, but the reality now is dire.
A few weeks ago, I found a website started by a Latina feminist and self-proclaimed mental health activist named Dior Vargas. The site isn’t extensive, but it features self-submitted photographs of readers of color who posed with handmade signs with their names, their mental illness or illnesses, and then a line or hashtag of some sort. Vargas states the project is a result of lack of representation. “This is NOT a white person’s disease,” the project description reads. As well as: “we need to confront and end the stigma.” This is the shared mission among official and unofficial channels of mental health advocacy, but it takes on a particular tone in the photo stream. A number of signs convey something to do with pride — I am on antidepressants and proud! — as if the dialectical opposite of shame was pride, the opposite of stigma was holding a sign saying I am bipolar instead of I have bipolar or, worse, I struggle with bipolar. It made me feel less alone. It made me feel more alone.
I am grateful for the anti-stigma work many activists groups have done since the days of Harvey Milk, but am concerned by the campus culture suggestion that I feel pride at everything that makes me different, the lone available affective response to what then becomes my primary identifier. When I introduce myself to a classroom of students at Yale at the beginning of a semester, it feels pretty rock and roll to say my name, introduce myself as their instructor, and offer nothing more. They can see me. They can see that my skin is the color of a lot of lazy metaphors, and they can sit down and hear me talk and I can share with them some better ones. I am not ashamed of my mental illness, but I will not say I am proud of it, because I am very careful about what I make with my hands and this is not it. We have some creative differences on the matter, my neurochemistry and I. I am proud when my father, his body torn by decades of manual labor, gets up early on a weekend to join me for a run around the cemetery. I am proud of my mother for making me look at pictures of headband-era Hillary Clinton every morning before I had to take standardized tests in high school. I am proud of my brother for graduating high school this year and for writing a book of comedic essays called Loser Like Me which contains only one kind of font choice I hated. I am proud of myself at night, when I have made it through another day, harder to kill than a weed, and I watch my person nod off right at the part of Moby Dick where the harpooner makes his entrance. It has been a year of nighttime reading and I think we’re on page 20. But I am not proud of my mental illness. I do all the fucking work.
I recently visited, for the first time since I was a teenager, my high school English teacher and her partner, a painter, in the Village. We exchanged stories and my teacher, who gave me her mother’s copy of Anna Akhmatova’s poetry when I was a freshman in high school, said that sometimes she would bring something I’d written to our school principal, a former English teacher himself, and he used to say, “Please tell me this kid isn’t going to jump off the roof one of these days.” She told him, no, the kid’s a writer! That was the punchline, I think, and the table laughed. I did not laugh. I was fifteen and had willed my way into reading some of Finnegans Wake and was excited by it, and obnoxious from it, but I wasn’t suicidal. I had not written anything dark. I do not think a precocious white teen whose parents were professors would have been flagged as suicidal because she was trying to find her voice and had just discovered the new avant-garde and had maybe purchased a beret in Chinatown, yellow because they’d run out of black. But self-expression of any kind at my high school was a cause for concern. At the time, more than 90% of the student body was at or below the poverty line, and I can describe the demographics of the school by offering to list the names of the white kids in the school. Hoodies, baggy jeans, handkerchiefs, shoelaces: anything could and was tied to gang activity. My principal once reached for a pink pebble necklace I was wearing. I had bought it at a store called Girl Props for $1.99. He said people might think I was in a gang.
I kind of am is the thing.