The Consequences of Talking Publicly About My Bipolar Illness
Psychologist and prize-winning author Dr. Kay Redfield Jamison reflects on her decision and efforts to reduce stigma
By Kay Redfield Jamison, Ph.D.
Co-Director, Johns Hopkins Mood Disorders Center
Dalio Professor in Mood Disorders
Professor, Department of Psychiatry and Behavioral Sciences
Johns Hopkins University
2021 Pardes Humanitarian Prize in Mental Health
2010 BBRF Productive Lives Award
2007 BBRF Falcone Prize for Outstanding Achievement in Affective Disorders Research
The following text is based on a recent lecture given by Dr. Jamison.
When I am asked to talk about the stigma of mental illness, I balk a bit, because I think the term itself is stigmatizing. But it may be useful if I provide a personal example, one that suggests what happens when you write about having a psychotic illness and describe having tried to kill yourself, and how you nearly did so. I would like to share with you the public reaction to that memoir and the reaction of some of my colleagues.
Before I published my book about my own experiences with bipolar illness, An Unquiet Mind, I decided to talk about my illness with a journalist who was writing a story for The Washington Post about my work. I knew that before the newspaper article came out, I was going to have to tell my patients about my illness.
I didn’t look forward to insinuating my own life and problems into longstanding psychotherapeutic relationships, but I had no choice. I sought out the advice of two experienced clinicians and colleagues and discussed with them a variety of ethical and clinical issues that might arise. None of us could predict what was likely to happen. There were, for me and for Johns Hopkins University, where I work, very real legal issues, issues of licensing for me, and issues of whether or not I could continue my clinical practice—which I did not. Stopping my clinical work was something I knew I would have to do and was very reluctant to do, but I felt strongly that it was advisable.
I was curious and concerned about the reactions of people who were in charge of academic and clinical affairs at John Hopkins. The chairman of my department and the president of Johns Hopkins Hospital could not have been more supportive, more generous in their response. And for that, I am eternally grateful. Theirs was not a typical response, I think, but it was certainly exemplary.
I was concerned about my patients. I’m not a therapist who believes in talking about my personal life to patients, and I certainly had not done so prior to disclosing my illness to them. Therapists have different perspectives on personal disclosure, but I had not ever talked about my illness to my patients.
I thought that I knew my patients well, but telling them that I had had a psychiatric disorder was not something that had been covered in textbooks, nor had it been discussed during sessions with clinical supervisors. I had no idea what to expect. As it turned out, I didn’t find it as difficult to tell my patients as I had imagined. Most of them were just simply stunned. “You seem so normal,” said one. “So Brooks Brothers-ish!” And indeed, over the next several weeks as I told my patients one by one, it was quite surprising to me the number of people who used Brooks Brothers to describe me. After my initial disclosure, and a session or two of discussing related issues and concerns, psychotherapy with my patients reverted to normal. I did find myself keeping more detailed clinical notes, however, as I was newly sensitive to potential legal issues.
Two fellow professors, whom I had been treating for years, expressed the hope that the academic and medical communities would become more aware of the extent of mental illness, and mental illness in their own ranks, and both remarked, with a surprising degree of bitterness, that they hoped that the academic and medical communities would become more tolerant. They made it clear they weren’t going to wait for this with bated breath. They both had been profoundly affected by stigma and the negative attitudes of their colleagues.
The responses to the Washington Post article, in which I openly discussed my illness, were various and complicated. I felt a discomfort in many of my colleagues and acquaintances, an awkwardness that made me cringe and want to bolt, but there was no place to run. Reactions from others were variously funny, insensitive, generous, wonderful, or cruel. The responses were, in short, very human.
Several of my colleagues at Hopkins told me that the chairman of my department had made it clear that I should not be made to feel that I was “alone out there.” I owe him and Johns Hopkins, the hospital, the administration, and faculty, an immeasurable debt. One day, the chief resident dropped by my office. She told me she had distributed the Washington Post article to all the residents, several of whom suffered from mood disorders themselves. Residents and medical students, as well as nurses and others on the staff at the medical school, called to talk about their own experiences with mental illness. So, too, did many of the faculty: surgeons, internists, oncologists, psychiatrists, cardiologists, basic scientists. Few specialties were unrepresented.
Not long after my public disclosure, I went to the annual meeting of the American Psychiatric Association. Most of those I spoke with were warm and supportive. More than a few, however, seemed acutely uncomfortable. They averted their eyes, drew away, said nothing. I was struck by the silence; it was bone-chilling. There was a sense from some that I should be embarrassed by my revelations. And when I was not, that they were embarrassed for me.
KINDNESS I COULD NOT HAVE IMAGINED
For every coldness or drawing back, however, there have been far, far more acts of kindness and of drawing me in. As a child I had been quiet and invisible when troubled. As an adult, I had hidden my mental illness behind an elaborate construction of laughter and work and dissembling. Now my mind and heart were bright lit on a page, behind a lectern, or on a television screen. Yet, despite this, it felt good to be honest, to be a part of the community which until recently I had kept to the edges of. I was no longer just a researcher and a clinician answering questions about diagnosis and treatment. I could talk of my own madness, my own fears, feel not so distant, not so hypocritical.
I received many thousands of letters in response to the publication of my book, An Unquiet Mind. Most were generous, but many were deeply disturbing. Religious diatribes were common. I received hundreds of letters from fundamentalist Christians berating me for turning my back on God and abandoning my Christian faith, which I had not been aware that I had or had not done. I got more than a taste of the intolerance and hatred that religious extremes bring to those with mental illness. It was unpleasant and deeply frightening. I was taken aback by the medieval qualities of some of the beliefs held.
Many letters were anti-science, antigenetics, anti-psychiatry. It was not new to me that a large number of people resent doctors or mistrust scientists, but I’d been relatively spared from this. I was surprised by the extent of the mistrust and the resentment. Many railed on about the depravity and cluelessness of myself and my scientific and medical colleagues.
Some people expressed resentment that I had had the advantage of financial security and supportive friends, colleagues, and family. What right did I have to complain? I could not possibly understand the real pain of mental illness, they suggested. One colleague, hard-edged and drunk, in front of many of our colleagues, snapped that she thought because I had had a privileged upbringing, which was a bit of a stretch, I had no right to discuss the suffering caused by mental illness. It was presumptuous, she said, to write about it. I found this outrageous. It seemed beyond the pale to have to explain to a professor of psychiatry that the pain of bipolar illness, like the pain of cancer, does not discriminate on the basis of “privilege.” Despite this, most people were incredibly kind. They were kind in ways I could not have imagined.
TALKING TO OTHERS ABOUT YOUR ILLNESS
Everywhere I have gone, I have seen the wreckage left by mental illness, and the resilience, inventiveness, and generosity of those who contend with it. More than anything, I have been impressed by what people survive—the pain, the injustices of a healthcare system that makes no pretense of fairness toward those with mental illness; financial ruin, violence, and most devastating, the suicide of a child, husband, or wife, or parent.
Nowhere has this mixture of devastation and bounty been more obvious than in talking with students who struggle with mental illness. I had been particularly eager to reach out to students, in part because the student years represent the greatest age of risk, and in part, because I, at that age, I had felt so terribly alone with the uncertainty and terror of my own mental illness. For students who are depressed or who have other mental illnesses, the contrast is razor sharp between how they feel and the energy and high spirits they observe in their fellow students. On every campus where I have spoken, students describe to me not only the pain and hopelessness they feel from their illnesses, but the lack of understanding they feel from their professors and college administrators, the lack of adequate health insurance, their fears about being asked to go on medical leave and not being allowed to return, and how aware they are that their behavior is frightening and disruptive to their roommates.
Students invariably ask me, “Do you worry about getting sick again? How have you stayed well?” And I tell them, “Yes, of course I worry, but it is good to worry.” I tell them it’s hard to get well, and it’s hard to stay well, but that it certainly can be done. When I talk to students, so many of whom have tried to kill themselves, I usually ask them, “Did you talk with your parents about this?” Few say that they have. I have been deeply touched by the courage of these students, struggling as they do to study and to compete, to love and to stay alive. I admire how they have played the cards, the hard, unpredictable cards they have been dealt.
I have spoken with hundreds of children and adolescents with depression or bipolar illness. They experience the same pain and have the same fears as those who are older, but because the illness is usually more severe in the very young, and because they cannot understand as much about their illness as those who are older, they have a particularly difficult time of it.
I was in Colorado several years ago, talking to children from 7 to 17, all of whom suffered from bipolar illness. As I was leaving, a young boy, perhaps 8 years old, came up to me and put his hand in mine. He looked up at me and said, “Are you really okay?” I put my arms around him, and I felt him sobbing. “Yes, I am,” I said to him, “I really am. You will be too.” I reached into my handbag, held out my key chain, and removed the plastic Bugs Bunny charm I had carried for years. I told him it was my extra lucky charm because it had not just one rabbit’s foot, but four. A small smile appeared. I gave him the key chain and assured him that Bugs Bunny would bring him the same good luck he had brought me.
I am an optimist. I tell the young people I talk to that bipolar illness is a bad illness to get, but that now is a great time to get it: the science is advancing rapidly, and public understanding is better than it has ever been. People talk about these things more. They write about them more. They are lucky to have benefited from early diagnosis and treatment— which was not the case years ago.
Science and more effective treatment are the ultimate de-stigmatizers of mental illness.
Written By Peter Tarr, Ph.D.