People like me with bipolar disorder must help shape research and clinical care

Doctors have observed and treated bipolar disorder for thousands of years. Known throughout history by many names, like depression, mania, manic-depressive illness, or psychosis, the disorder is common and closely tied to that which makes us human: our thinking, our behavior, our hopes, and our ambitions.

A solid foundation of science grounds the understanding of bipolar disorder; what’s lacking are strong data about the experience of people with the condition. Small wonder, perhaps, that the greatest advancement in treatment is still the discovery of lithium therapy for it in 1949, despite all the strides in science and modern medicine made since then.

How can psychiatry and society expect to meaningfully improve care for something as common yet personally unique as bipolar disorder without a thorough understanding of how it is experienced by those who have it?

Research efforts undertaken so far, with inadequate funding, have been more quantitative than qualitative in nature — meaning that research has focused on specific clinical measurements and biomarkers rather than the experience of living with bipolar disorder. Psychiatry has gained more precise language for the diagnosis of depression and bipolar illness; this is necessary for good science and clinical care. But while it’s important to understand the fundamental aspects of an illness, scientific description alone can’t convey the full experience of depression and mania.

In the rush to adopt precision medicine, as critical as it is, there is a risk of losing an essential measure of understanding. To provide the best care, it’s necessary to understand how depression and mania feel to those who experience them and how it feels to be subject to the pain and unpredictability of mood disorders. Good research is based on accurate observation, which comes not only from doctors observing patients but also from patients observing themselves and putting their experiences into words.

Humans are a storytelling species; if we hear the stories of those who have been depressed or who have experienced mania, we get a more visceral sense of what psychological suffering means. This can not only bring personal understanding and empathy, but influence medical practice, government policy, philanthropy, and research priorities.

In 1908, for example, Yale student Clifford Beers published “A Mind that Found Itself,” a compelling and distressing account of the inhumane conditions he experienced in both private and public institutions while struggling with mania, leading to the establishment of the Henry Phipps Psychiatric Clinic at Johns Hopkins and to the first-ever mental health advocacy movement in the United States. Conveying and appreciating the experience and personal realities of mood disorders can bring about change that improves hundreds of thousands of lives.

To this end, I am involved in a research effort that, in addition to studying the clinical and basic sciences underlying bipolar disorder, is grounded in the experiences of those who have the illness. The Breakthrough Discoveries for Thriving with Bipolar Disorder (BD²) Integrated Network connects research and clinical care through a longitudinal cohort study of people with bipolar disorder. It will allow scientists and clinicians to collect rich qualitative and quantitative data over the course of five years, all while improving clinical care in near-real time. This approach offers hope to shorten the current average of 17 years to translate scientific discovery to effective clinical treatment for people with bipolar disorder.

The product of a unique collaboration between Johns Hopkins University, where I work, and institutions like the Mayo Clinic and Mass General Brigham’s McLean Hospital, the study is based on sophisticated, continuous engagement with participants to understand their daily lives while improving their care. Participants will be asked which treatments have helped them and which have not, what they find most painful and debilitating, and what they would most like to see improved in their care. The questions were developed in close consultation with people who have bipolar disorder, myself included. The first participants were recently recruited. This model of bringing doctors and their patients together with researchers and scientists is a significant step forward for an illness as personal as this one.

As someone who has lived with bipolar disorder most of my life, it’s heartening to see thoughtful people investing time, effort, imagination, and money into studying this illness. It gives hope to people with a difficult disease. But it’s up to those in science and medicine to answer that hope with earlier and more accurate diagnoses and better treatments. By meaningfully engaging with people with bipolar disorder and translating their experiences into scientific research, it’s possible to move from hope to real improvement in treatment.

Kay Redfield Jamison, Ph.D., is the Dalio Professor in Mood Disorders and professor of psychiatry at the Johns Hopkins University School of Medicine; co-director of the Johns Hopkins Mood Disorders Center; author of An Unquiet Mind (Knopf, 1995), “Fires in the Dark: Healing the Unquiet Mind” (Deckle Edge, 2023), and other books about mental illness; and an advisor to the BD² Network, a philanthropically funded scientific initiative.