A Conversation on Stigma with Renowned Psychologist Kay Redfield Jamison

As a young girl growing up in Washington, D.C., Kay Jamison was intense, curious, and had a keen fascination with science. She volunteered as a nurse’s aide, a candy striper, and even assisted with minor surgical procedures at the hospital at Andrews Air Force Base, where her father was a pilot and meteorologist.

At 15, she toured a federal psychiatric hospital, St. Elizabeths in the District of Columbia, for the first time, which she says she found “fascinating and horrifying,” not knowing that she, too, would soon suffer from own mental illness.

And while Jamison had always had a passionate personality, by the time she was a senior at Pacific Palisades High School in suburban Los Angeles, she found her moods shifting between two extremes—exhilarating highs and dark, unyielding lows. That pattern continued for years, though she never sought help or intervention.

It wasn’t until 1974 (just three months after becoming an assistant professor of psychiatry at the University of California, Los Angeles) when she became, in her words, so “ravingly psychotic” that she could no longer ignore the fact that something was terribly wrong.

That something was bipolar illness, then known as manic depression. It was, in fact, a disease she was all too familiar with thanks to her patients whom she diagnosed (and her own father who struggled with the illness). And though she shared her diagnosis with colleagues and close friends, her illness was largely a secret.

After years of serious struggle, a near-lethal suicide attempt, and always a fear of being “discovered,” in 1995, Jamison wrote An Unquiet Mind: A Memoir of Moods and Madness, an astonishing account of what it’s like to live with bipolar illness.

As both a student of the disease and someone who struggled with it, the stakes could not have been higher. Because she was afraid of the way her work would be perceived, Jamison knew that telling her truth would mean giving up her clinical practice, by then at The Johns Hopkins Hospital. She also feared that publicly sharing her story would lead to losing her hospital privileges or, even worse, her medical license.

It did not. Instead, she revolutionized the field, becoming one of the most famous faces of the illness (along with a long line of luminaries who suffered from bipolar disorder, including writer Sylvia Plath, poet Robert Lowell, and composer Gustav Mahler) and one of the foremost authorities in the world on the disorder, even co-authoring the definitive medical text on the topic.

The acclaim, however, has not made her immune from detractors. As she writes in a 2011 preface to An Unquiet Mind, 15 years after the book’s first printing, “The kindness and generosity of most people was heartening, the vitriol and irrationality from others disturbing.”

Thirty years since the publication of her groundbreaking book, we spoke with Jamison (now professor of psychiatry at The Johns Hopkins School of Medicine and co-director of the Johns Hopkins Mood Disorders Center) about stigma, how to prevent it, and how views about mental illness have changed since she wrote her memoir.

Do you remember the day you were diagnosed with bipolar illness, which was then known as manic depression?
I went to a psychiatrist who had been my clinical supervisor when I was an intern and I trusted him implicitly as a doctor. He was the only one I trusted to go see and he just gave me a very thorough psychiatric examination. He said, “It’s unequivocal. You have manic-depressive illness. You are going to need to be on lithium”—and that was the beginning of struggling with that notion of taking lithium. Overwhelmingly, I was relieved because I knew he was right and I admired him for not mousing around about it and not prettying it up and just saying, “This is going to be really hard.”

Was there a light-bulb moment when you decided to write An Unquiet Mind?
Some of it was that I felt hypocritical treating and studying the illness and not acknowledging that I had it. Also, I got fed up, hurt, and overwhelmed by the lack of information about how many people have bipolar illness and how unaware the world is in general.

When did you start thinking about the impact of sharing your story?
All along, and certainly when I was going to publish a book about my illness, I thought about it endlessly. Would I lose my job? Would I lose my hospital license? Would I lose my state license? I knew I would lose my privacy and I knew I would lose my ability to see patients.

Was any part of you reluctant to share?
Of course—and I still am. I am trained to be a therapist and I loved it. It was a huge part of my clinical identity. I practiced close to 20 years, including clinical training before giving it up.

Why did you feel you’d lose the privilege of seeing patients for sharing your story?
I had written a very personal book. I had practiced before [the book was written] and had told people about my illness and also colleagues with whom I’d worked to feel free to contact my psychiatrist and chief of my department if there were any concerns whatsoever. Fortunately, that didn’t happen. My book was terribly personal and I think patients have a right to come into your office and talk about their own problems without putting it through the whole kind of strange way of looking at it from someone who has written a book about it.

Where does stigma come from?
“Stigma” is a word I really don’t like, I prefer the word “discrimination,” partly because it has legal implications but one uses stigma because it’s widely used.

So where does discrimination come from?
If you look at the animal world in general, whether you look at a dolphin or a sea lion who is strange to a group, that will be picked up immediately—and the animals will respond accordingly. It’s a natural reaction when things are different. It’s not surprising that when people act in ways that are not usual or ways that make people frightened or hopeless, people are going to distance themselves from it. I feel very strongly where our field [of medicine] has let all of us down is that you can’t just expect people to understand—that is unreasonable. What you can do is give them information with which to possibly change their mind.

How do you prevent discrimination?
The greatest way to destigmatize any illness, and particularly with a psychiatric illness, is with research and good treatment. If you look around you in medicine and you look at epilepsy, for example, it’s not that there’s not still stigma around it but there’s much less stigma than there used to be. And that started when you could begin to control public seizures. And with something like cancer in the ’50s, when it was pretty much a death sentence for many kinds of cancers, people wouldn’t talk about it—and now it’s treatable, so they talk about it much more.

What is the impact of stigma?
The most devastating impact is that people don’t get treatment. They feel alone with their suffering and they feel like they don’t want to reach out and others don’t understand or their licenses are going to be pulled or they are going to lose a job or a relationship—and those are all very legitimate reasons. And then, of course, people stigmatize themselves by saying, “I should be able to pull myself together.” This seems much more a part of personality than other medical illnesses. It seems like you ought to be able to get over it by dint of will.

When you got sick, was your line of thinking that you should “just be able to handle it”?
At some point it became clear I was ill and that I was not anywhere near myself. It took a while. I was brought up like many people to believe that you could just get a grip—I was brought up Episcopalian and in a military family and in worlds that put a real premium on coping with something yourself and getting on with it. And that’s completely not helpful. It’s a good philosophy of life in general, it’s just not a good philosophy of life when you are ill.

Do you see things changing in terms of discrimination?
I do. The things that have helped psychiatric illnesses is that there are many more treatments available than there used to be. And people are much more aware of it than they used to be. General physicians are more aware of it, too. And people in general are aware that there are antidepressants and you can go to a doctor and maybe get some help. People talk about it more. And thanks to the internet, people can learn much more about it.

People are better informed than they used to be, but I also think there’s a huge amount of misinformation and a lot of terrible attitudes. If you look at the language in the public arena in politics, you can say people are “crazy,” “come from insane asylums,” or are “nutty as a fruitcake.” People can say things about those with mental illness that you could never say about any other large group. That’s painful for people.

How did the pandemic impact people who were struggling?
One of the things that happened during the pandemic is that people became much more aware of the extent of mental illness around them, because they were in day-to-day contact with their kids in a way in which they are ordinarily not—so they saw the illness. But it has also had a tendency, perhaps, to trivialize—everything is “anxiety” and “depression” in a general, somewhat ill-defined way.

There’s all these sloshing around of concepts together that take away from the notion of illness. People say, “mental health issues” instead of mental illness. I suppose it’s meant to be less stigmatizing and more normalizing. But it’s confusing. I just think that the language has gotten mushy.

You were diagnosed while in training. How have you seen attitudes toward seeking help change within the medical community?
Residency programs are doing better than they used to and are more aware of depression and stress. It’s up to medical students and medical school faculty to make education about depression a priority so that students recognize symptoms if they get them—or can recognize them in their colleagues. It’s better now than it was, but it’s still pretty minimal.

Your memoir was published 30 years ago. Would you do anything differently now?
Probably not—you have to write what you have in front of you in terms of your life. You are not given the opportunity to go back and change things.

What advice would you give to your younger self and what do wish you knew then?
I went off my medication on and off for the first few years of my illness but that was very costly, there was tremendous loss, and I haven’t stopped my medication for decades, but I regret that hugely.

What personal price did you pay for going off your medication?
Getting manic, getting depressed again, getting suicidal, nearly dying by suicide.

What’s your advice to anyone who is struggling or who loves someone who is?
Learn. Read. Be aware that good treatment exists and that the consequences of not getting treatment are pretty awful.