by Terri Cheney
For my thyroid, my doctor prescribed a single blue pill in the mornings. Tiny. One.
But without a doubt, the most amazing thing about my thyroid diagnosis was the total absence of stigma. I didn’t have to lie about my symptoms or make up more socially acceptable ones, as I frequently feel forced to do with my bipolar disorder. I gleefully told everyone who’d been concerned about me, “I’ve got hypothyroidism!” and nobody blinked an eye.
I was blown away by my own hypocrisy. As a mental health advocate, I constantly espouse that depression is real, and that it’s every bit as physical as diabetes, which also requires medication. I firmly believe this: I can feel the profound effects on my own body. And my belief is more than subjective. I’ve studied the research, talked with experts, even attended Grand Rounds lectures at teaching hospitals. Nothing has contradicted this truth: Depression is a real disease. And yet, I remained immensely relieved that I wasn’t “just” depressed—that I had an objectively verifiable illness. Shame on you, I admonished myself.
But my heart was almost instantly lighter, and within a week I started feeling better. Not wildly so, but enough to realize how heavy the burden had been the past several months. And to understand that I still had a long way to go before I believed in my own wisdom.
SECTION III
User Precautions
STIGMA
“Mental illness is nothing to be ashamed of, but stigma and bias shame us all.”
—President William Jefferson “Bill” Clinton (1946–)
“If you judge people, you have no time to love them.”
—St. Teresa of Calcutta (“Mother Teresa”) (1910–1997)
Over twenty years ago, the Surgeon General’s report on mental health proclaimed that if we are ever to improve mental health and its treatment, we must address the problem of stigma, which so grievously “deprives people of their dignity and interferes with their full participation in society.” This led to a diverse set of studies in the United States and around the world that sought to disentangle the phenomena underlying stigma.
One of the shared findings was that stigma is essentially a three-part process: stereotyping (i.e., negative labeling), prejudice (the emotional consequences of stereotyping, like fear and hatred), and discrimination (the behavioral reaction). This can occur on a personal, public, or institutional level, leading to disparate treatment—e.g., the allocation of fewer financial resources into the mental health system than into the somatic medical system. Perhaps this explains why the National Institutes of Health ranks research on the West Nile virus, which kills about 137 people a year, a higher funding priority than teen suicide prevention.
One of the most intriguing targets of the international studies was self-stigma—the practice of internalizing stereotypes and prejudice, generally to one’s detriment. But as a University of Chicago study noted, a careful review of the research suggests a paradox: “Namely, personal reactions to the stigma of mental illness may result in significant loss in self-esteem for some, while others are energized by prejudice and express righteous anger.” Those who became energized and outraged had “high group identification”—meaning they had come to accept their mental illness and to see the unjustness of others’ negative responses.
This syncs with findings about the three main strategies that have been used to fight stigma: protest, education, and contact with the mentally ill. According to the European Psychiatric Association, “contact combined with education seems to be the most promising avenue” (https://www.ncbi.nlm.nih.gov/pubmed/16171984). In other words, when mentally ill individuals find the courage to disclose their illness to others, they combat both their own self-stigma and other people’s harmful misconceptions. It’s a powerful weapon against a life-threatening enemy.
DOC SHOCK
My long-term internist retired, and I went to see a new one because I had a burning pain in my upper abdomen, and I was afraid my ulcer had flared up again. I’m a very good patient, in my humble opinion. When I show up at the doctor’s office I’m armed with my questions on a legal pad; I’ve done my homework. And I always present the doctor with his own typed copy of The List: an up-to-date compendium of all the drugs I’m on. I’m convinced that medicine should be an interactive process.
The List is a formidable creature, I’ll be the first to admit. The medications I use for varying reasons take up almost a whole page. When I hand it over, I expect some degree of surprise: “You’re taking all of these?” What I don’t expect, and have no tolerance for, is judgment that predates the facts. Especially in a doctor.
Let’s call him Dr. X. I wish you could see his office: swanky, with the latest in high-end modern art on the walls and all sorts of fancy diagnostic technology. He’s maybe fifty and looks like he plays tennis or golf a couple times a week: nice tan, easygoing air. He took one look at The List and said, “What are you on all these for? You don’t need to be on this, or this, or this. And you should get rid of this and this.”
“I take those for my bipolar disorder,” I said.
“But look at you.” He scanned my chart. “You’re a lawyer; you’re a writer. You’re a high-functioning person.”
“I am now that I’m taking these meds.”
He shook his head. “I don’t believe it.”
I spent the next fifteen minutes trying to convince him that (a) I was indeed bipolar; and (b) I needed to be on medication to treat it. A fairly significant amount of medication, I’ll agree. But I defended each pill like the erstwhile litigator that I am because I believe in my treatment and my right to be sane.
I might as well have been talking to his stethoscope. He kept giving me backhanded compliments, saying I was “impressive” and “articulate.” Hence I couldn’t be mentally ill, was the none-too-subtle subtext. I finally lost my temper, something I’d never done with a doctor before.
“Look,” I said, “I’ve written a whole book about my bipolar disorder, so I think I know it pretty well. Trust me, you don’t want to see me off these meds. I’ve attempted suicide more times than I can count. I was hospitalized for three years. I’ve had electroshock therapy. I’m not fooling around.”
I felt a hot flush suffuse my face as I fought back tears of frustration. The silence after I stopped speaking was so loud I could hear my pulse pounding in my ears. Dr. X put The List down and looked at me. “Well, if you’re really bipolar, then I’d say this so-called ulcer must be anxiety, and it’s just in your head.”
He was lucky there were no sharp objects lying around. With a poise that belied my fury I stood up and thanked him for his time. I hate that I did that, but I was brought up to believe that doctors sit at the right hand of God. Certainly they’ve wielded enough power in my life that I respect their authority.
The minute I got to my car I called my therapist and told him what had happened. I asked for referrals to a new internist. Shaking, I ended the call. Then at last I started to cry. But these tears weren’t as terrible as the ones I’d tried to suppress: They were as much of relief as anger. I wouldn’t be seeing Dr. X again.
It disturbs me deeply whenever I encounter ignorance about mental illness. But this degree of cluelessness, from a man who has such tremendous influence over so many lives, shocked me. This was Beverly Hills, and I was a middle-class white woman; what on earth must the situation be like in less affluent places? Or for anyone who already faces discrimination based on race or sexual orientation? Socioeconomic status and language difficulties create enough barriers to treatment, without the further impediment of stigma from health care providers.
According to the Department of Health and Human Services’ Office of Minority Health, ethnic minorities are critically under-represented in the provider population, which “often knows little about the cultural values and backgrounds of patients, or about the traditions of healing and the meaning of illness within different cultures.” As a result of this lack of “cultural competence,” the reported satisfaction with patient-physician
interaction is significantly lower among people of color.
I thought about a badly depressed young black woman I’d met in the hospital, who came from South Central L.A. She’d told me that in her community, it was taboo to complain about mental health problems to anyone, even if you were fortunate enough to have access to care. “We survived slavery,” she said. “What’s a little sadness, compared to that? Just pray it away, I was told.” And yet, the rate of suicide among young black men has risen 60 percent over fifteen years, and the suicide rate among young black women over the same period has risen a staggering 182 percent.
I also thought about all the LGBTQIA people I knew, struggling with such tenacity to come out of the closet, only to find that their battle against discrimination doesn’t end there. A study of LGBTQIA mental health consumers found that they often felt compelled to hide their sexual orientation or gender identity in mainstream mental health settings, for fear that these issues would be used as further “evidence” that they were mentally ill. Hospital patients, especially in inpatient units and day programs, found that other patients were “frequently derogatory or even threatening” toward them, and that the staff was slow to discourage this behavior.
I witnessed this myself during my hospital stays. LGBTQIA patients often kept to themselves, not intermixing with the rest of the population. When I asked one young man why, he said he’d been warned by a male patient not to use the men’s restroom; and that his own doctor had advised him “not to be too graphic” about his problems in group therapy sessions. Such homophobia and heterocentrism in the mental health system is particularly tragic, since the LGBTQIA community desperately needs intervention. LGBTQIA youth are more than twice as likely to feel suicidal, and over four times as likely to attempt suicide, as heterosexual youth, and 40 percent of transgender adults have attempted suicide in their lifetimes.
In this era of rapidly shifting demographics, it belies reason that only a privileged few should be able to obtain satisfactory mental health care. As a society, we rely on the sanity of all different types of people, now more than ever before. And we rely on our doctors to help us find and preserve that sanity. While many providers, if not most, are no doubt trying their best, it can sometimes be a dangerous trust. As James Baldwin said, ignorance allied with power is the most ferocious enemy there is.
THE RICH AND FAMOUS AND DESPERATELY SILENT
I had breakfast one morning with a Very Important Person, who happens to be bipolar. He’s a gifted performer with a devoted fan base. I’d only met the VIP once before. I’d gone backstage after a performance, and for some reason, I can’t recall why, I’d briefly referred to my bipolar disorder. He eagerly took me aside and whispered, “Me, too. We have to talk.” And talk we did a few weeks later, nonstop and breathless for over two hours, our omelettes and coffee growing stone-cold.
We quickly learned we had loads in common. We laughed at the outrageousness of past manic adventures, and even held hands at one point in recognition of shared despair. I was surprised that our lives had followed such parallel tracks. There was the early abuse of alcohol in an attempt to self-regulate the highs and the lows. There was the flirtation with self-harm to release the otherwise unbearable pain. There was the guinea pig agony of medication trials, seeking just the right balance of chemicals to restore equilibrium. But there the striking resemblance stopped.
I was out and he was not, and the difference was fundamental.
“I’d never get work again,” he said. Disclosing his mental illness would alienate his fans and the entertainment industry. In his opinion, bipolar disorder was a curse, with no point and no meaning. Why let the world in on his shame? Then he sat back in his chair, emphasizing the distance that had just opened up between us.
I tried to explain that we weren’t as far apart as it seemed. For many years—for most of my life, I admitted—I’d felt the same way. I’d done whatever it took to hide my condition, until lying became as instinctive as breathing. He nodded; he knew what I meant. “So what finally made you change your mind?” he asked. His voice, that wonderful voice that has enthralled so many people, was calm. But I thought I detected a slight note of eagerness, too.
I had a moment’s weakness: I wanted to tell him it was my hard-won courage, or my faith in humanity, or an overwhelming sense of decency, or some other noble reason that had inspired me to go public. I wanted him to admire me as much as I admired him. But I took a sip of cold coffee, and it was as bitter and bracing as the truth. I wasn’t brave, I told him. I was desperate. I felt so trapped by my lies I couldn’t remember anymore what was real and what was fabrication. The only way out was all the way out.
“Was it worth it?” he said. And then I heard it for sure: that faint tease of hope.
This part was sweet, and easy. I explained to him how much more rewarding my life has been since I’ve come out to the world: the avalanche of messages I’ve received thanking me for my example; the outpouring of genuine affection and concern; the astonishing stories that have come my way—so many of them, so inspiring. “People are desperate to hear that they’re not alone,” I said.
A flicker of light brightened his face for a moment, I’d swear to it. But then he shook his head, and I felt so sad. He was denying himself the gift of community, which was driving him further and further into secrecy and loneliness, and into his disease. Someday, he said, after his career was over, he’d really like to help others who were struggling. “Not now,” he said. “But someday.”
“You could have a tremendous impact on people,” I told him.
Perhaps that appealed to his artist’s narcissistic temperament. He smiled a crooked smile and looked at me. “I’m so tired of keeping it secret, worrying all the time that someone will find out,” he said.
“I know,” I said. “And all it takes are four little words: ‘I have bipolar disorder.’” But we were done, and I knew it. I signaled for the check.
We hugged each other good-bye, and I wondered when or if I’d ever see him again. I hoped I hadn’t gotten too close. Then again, I hoped I’d gotten close enough. I’d love to hear him sing something else, for all the world to hear.
SELF-STIGMA: WHEN THE MIRROR LIES
Sometimes I think I’m making my bipolar disorder up. On a luscious morning like this one, when the white roses on my neighbor’s trellis are flourishing and so am I, it’s hard to believe I was ever the grief-stricken wretch I’ve written about so frequently. Happiness seems like the rabbit a magician suddenly whips out of his hat: It just appears, out of nowhere, and I clap my hands like a delighted child. I think, isn’t life marvelous? Because I don’t remember it ever being otherwise. Magical, yes. Miserable, no.
I can see why people go off their meds.
It may seem strange that I’d ever doubt my own mental illness, since I’ve published two memoirs about it and discussed it with people from all over the world. It’s as much a part of my existence now as my freckles and red hair. I never question the fact that I’m a natural redhead. I never wake up in the morning and expect to be blond. So why then do I wonder if I’m bipolar? Why do I tell myself that it’s a brand-new day and I feel just fine and whatever was I thinking?
This is not just my personal quirk—I’ve been plagued by other people’s doubts, as well. Case in point: years ago, I was dating a psychologist. He was sexy and charming and easy to talk to—he had that wonderful soothing voice all therapists must learn in Therapy 101. So it wasn’t surprising that things moved quickly between us, but I hadn’t disclosed my condition to him yet. I wanted to wait until I was sure sex was in the offing. I thought it was important for him to know me then, just as I hoped he’d reveal himself to me.
One evening, after a prolonged bout of kissing, I knew the time had come. I pulled back and said, “If we’re really going to do this, there’s something I’d like to tell you.”
“After,” he whispered.
“No, I think we need to talk now.”
“Good
Lord,” he said. “The need-to-talk line? So soon?”
I ran my fingers through his hair and smiled. “It’s not that kind of talk. I just thought you should know that I’ve been diagnosed with bipolar disorder. It’s pretty well controlled with therapy and medications, but I can be erratic at times.”
Now he was the one to pull back. “You’re not bipolar,” he said. “I’ve seen plenty of people with bipolar disorder, and you don’t fit the bill. You’re a successful lawyer, for Christ’s sake.”
“But my doctor says—”
“Doctors misdiagnose all the time. We’ve spent a lot of time together, and while you may be intense and a little neurotic, I’m sure you’re just as normal as the next person.”
You’d be surprised at what the next person is hiding, I thought, but all I said was, “It hasn’t been an easy road. But I’m much better now than I was before.”
“You’re better because you never were sick,” he said.
I started to protest one more time, but he stopped me. “Less talking, more kissing,” he said, and he took advantage of the sweet spot on my neck. Well, nobody can say I didn’t try, I thought, and gave in to the momentum. We made love and it was fabulous and he never called me again.
Years later I ran into him at a dinner party. I was on the combative side of mania, so I asked him, “What the hell ever happened to us?”
“You were so convinced you were insane,” he said. “And I knew you weren’t. That felt creepy to me, like too much baggage.”