Unseen mental health experts: people with mental illness

When I was seven years old, I watched as police carted my father out of the house and took him away. He had severe bipolar disorder and was experiencing what I know now to be an “episode” of this mental illness.

What I learned over the 40 years that my dad was alive is that he could foster a loving relationship despite not ever mastering his recurrent episodes. The answers to the rest of my many questions about my father’s illness were nowhere to be found.

When I wanted to understand how to help my dad, who was ill, scared, and ashamed, I didn’t find any help at the bookstore. Where were the other people who had walked these lonely miles? Memoirs were interesting, but hard to learn from. And textbooks summarized treatments, which wasn’t what I wanted. I was looking for a way to learn from other people like my dad and my own family to reduce shame and help with problem solving. That book didn’t exist.

I became a psychiatrist to find answers and help address what my dad, my family, and so many others have experienced in their journeys with mental illness. I am now double-board certified by the American Board of Psychiatry and Neurology in adult psychiatry and child and adolescent psychiatry, and have gotten some answers along the way. But I’ve learned even more by talking with thousands of people living with mental health conditions and in my work at the National Alliance on Mental Illness (NAMI). I’ve discovered a new set of experts — people with mental illness — who can help others live with these conditions.

When I talk to people who have experienced mental illness, I often ask what would have helped them along the way. Some cite specific tools, like psychotherapy or peer support family engagement or a medication or a combination of these. Many answer with a hope to pass on their lessons: “that my story will help someone else.”

Sharing their stories to help others, giving voice to what once might’ve been unthinkable, holds a power that can be healing not only for the person listening but also for those speaking.

The mental health system in the United States is chaotic, underfunded, hard to access, and has failed to meet the increasing demand for help. The country needs to determine a unique, even radical, path for reimagining treatment and, in the meantime, offer a different perspective on what “expertise” means.

For years, society has discounted the idea that individuals with lived mental health experiences are experts. I believe that’s wrong: people who have lived with something for years can have deep, expert-level knowledge of their condition. Lived experience is expertise.

If you’ve lived with bipolar disorder for 20 years, you’re intimately familiar with what works for you. If you’ve loved a son or daughter with schizophrenia, you’ve learned something about communication strategies. If you were doing self-harm and found dialectical behavior therapy to be a lifesaver, you might be well-versed in healthy coping strategies.

No one sets out hoping to become an expert on the experience of mental illness — they are thrust into it. Taking their expertise and sharing their unique, individual experiences with others in conversation, through advocacy or via peer education or other routes, can provide hope, solidarity, and the important feeling of being seen and heard.

Given the shame and discrimination that a mental illness can carry, it would be easy to think that people would be reluctant to engage in intimate discussions about their quest for recovery. But this kind of altruism is alive and well in America, I found while writing a book on navigating mental health for NAMI.

I started with the plan of interviewing 50 people to share their stories, using their real names, to help others. But I ended up talking with 130. Even 10 years ago, I don’t think I would have found that many people inclined to share so bravely and publicly.

I’ve uncovered new things from these stories. One woman I met who lives with bipolar disorder organized her successful school experience based on her patterns of mood disorders. She successfully took harder classes with writing assignments in the semester she was less likely to have mood episodes. This kind of pattern recognition could have helped my family. Another woman I interviewed shared her story about struggling with mood symptoms, raising a young family, and having trouble managing her household, especially the kitchen. At a peer support group, someone gave guidance that no professional was trained to offer: paper plates. Those two simple yet life-changing words helped her manage her symptoms. These are just two examples of expertise gained while living with mental illness.

As the U.S. strives to build a stronger mental health system, one that is accessible to all and includes the broad range of science-backed approaches, we should listen to the valuable perspectives of people with lived experience. I am by no means anti-professional, but there is healing and wisdom in stories that can end persistent cycles of isolation and blame so often linked to mental illness. “Both/and” thinking is what is needed.

It’s time to honor experts in their own right. If you have dealt with mental illness, as an individual or a family member, share your experience in places that feel safe because you never know who is listening — and who it might help.

Ken Duckworth is a psychiatrist, chief medical officer of the National Alliance on Mental Illness, and author of “You Are Not Alone: The NAMI Guide to Navigating Mental Health ― With Advice from Experts and Wisdom from Real People and Families” (Zando, September 2022).