Personal Accounts: Today I Wear a Blue Hat

A surge of anger rose through me as I read the reviewer comments on my grant application. One comment stated that there did not appear to be meaningful involvement of persons with lived experience with mental illness in the proposed study. The reviewer was correct; I had not adequately articulated the plan to involve persons with mental illnesses in the project. In fact, had I been a reviewer of my application, I would have made the same comment. But I was frustrated by the tacit assumption that members of the research team did not have lived experience unless their role in the project was as a “consumer.” If this was the assumption, did this mean that reviewers could not imagine that members of the team with research and academic credentials could also have lived experience with mental illness? Of course, how could reviewers know unless such members of the team had disclosed it in the application? And if they were “outed,” would this have an impact on the assessment of their abilities to successfully complete the proposed research?

These thoughts churned in my brain while strong emotions of anger and shame knotted my stomach. I, the principal investigator of the application requesting over $3 million in federal funding, by most definitions have such “lived experience.” In fact, I have spent over 18 months of my 45-year life in a psychiatric unit. I was first hospitalized at age 11 in a pediatric psychiatric unit and received a diagnosis of anorexia nervosa, rule out depression. At admission, I was 4 feet 9 inches and weighed 55 pounds. My initial psychiatric screening record indicates that I stated, “Sometimes I prefer to be dead; nothing will get any better.” I remember fantasizing about killing myself, and on one occasion prior to the hospitalization, I made a half-assed attempt to hang myself with a coat hanger. It broke, and I never told anyone about it. I was discharged six months later and 25 pounds heavier to start seventh grade halfway through the year.

Things were manageable for close to two years, into my freshman year of high school. I ran seven miles a day, managed to keep my weight stable, and was miserable. Then I stress-fractured my hip and was sidelined from compulsive exercise. Things fell apart. Some days I could not get myself out of the house to go to school. My eating got out of control, but this time, instead of dieting I was bingeing. My mind became preoccupied with thoughts of suicide, and I was admitted to an adolescent psychiatric unit. During the 12 months I was there, my records indicate diagnoses including bipolar disorder with atypical features, major depressive disorder, bulimia, and borderline personality disorder (go figure—I was an angry 14-year-old girl). While an inpatient, I experimented with drugs and alcohol for the first time and learned to throw up after bingeing. Interestingly, I also learned to socialize with kids my own age, and I learned that externalizing behaviors are far more fun than internalizing behaviors.

When discharged, I returned home and reentered high school at the end of my sophomore year. Previously, despite the mental health issues and hospitalizations, I had been a straight-A honors student. However, this time when I returned to school, I really did not care about my studies. While I managed to pull acceptable grades with little work, I spent more time skipping school and partying with a new group of friends who did not judge me for being screwed up. This created a great deal of conflict with my parents, but overall I managed to avoid the suicidal cliff for over a year. But then, for no particular reason, a dark cloud moved in at the beginning of my senior year. I started missing school—not to go hang out with friends, but because I could not get out of bed and get going. I decided I just was not fit to survive and made my one serious suicide attempt. I took a full bottle of imipramine and chased it with half a bottle of whiskey. I might have been successful, but at some point, in drunken regret, I called a friend. I spent a few fuzzy days in an intensive care unit before being transferred to the adolescent psychiatric unit for a week. My discharge summary indicates that my parents were advised to send me to the Menninger Clinic. They chose not to do that.

I went home but could not face returning to high school. At one point, I was considered a dropout until the school administration was convinced that I had enough credits to graduate early. I did have enough credits, but I think the administrators were mostly relieved to have me off the school roster. The next few years were extremely rocky. In the back of my mind, I kept the option of suicide open. But I stayed out of the hospital, got a job, and eventually went to college. During this time, I had a wonderful psychiatrist (Jan Fawcett) whom I trusted and who listened and treated me respectfully. That was a new experience for me. I grew up a lot (although that is still a work in progress), developed a sense of what I wanted for my future (which included wanting a future), and started accumulating some successes on the path to becoming an adult.

As an adult, I have been very fortunate to have choices in where and from whom I receive mental health services. In addition, I respond extremely well to selective serotonin reuptake inhibitors with minimal side effects. I have had wonderful academic and professional opportunities and fabulously supportive mentors and friends. Although my marriage was less successful, I have two beautiful and surprisingly well-adjusted children. I have a job that allows me to do work that I love while having the flexibility to take care of my family.

My research and professional interests have grown directly from my experiences, although I have rarely disclosed the connection. I have worked with Patrick W. Corrigan, Psy.D., on his research on mental illness stigma and strategies to eliminate it. Pat has been a wonderful mentor and friend and is one of the few people in my professional circle to whom I have disclosed my psychiatric history. I often explain that my other interest, which is focused on criminal justice and mental health issues, stems from my work as a probation officer early in my career. That experience informs my work in this area. However, to be truly honest, I must admit that had I not come from a white, educated, middle-class, privileged background, I would likely either be dead or receiving services at the criminal justice–mental health care interface.

Over time, I have felt disingenuous for not disclosing my mental illness in my work. I considered disclosing in my response to the reviewer’s concerns about lack of consumer involvement but recognized that this would not adequately address the concern, given that my experience is just that—my experience. The luck and privilege involved in where I am today do not escape me. Given the focus of the research, the inclusion of those with lived experience in the public mental health and criminal justice systems is critical to the project. I actually did have a plan to include consumer advisors on the project but failed to adequately articulate this in the text of the application. Along with addressing other concerns raised by reviewers, I described this plan in the revised application, which was funded. The project is now under way, and I have received extremely useful feedback and guidance from the study’s consumer advisors.

The other reason I did not disclose in my response to reviewers was fear. I was worried it would call my ability to implement the large, rather complex project into question. I am a tenured faculty member and a researcher with a track record of publications and successful federally funded projects. As a stigma researcher, I know that contact with people with disclosed mental illnesses is the best strategy to reduce stigma. The greater the number of people who are willing to disclose, the sooner we will eliminate stigma as a barrier to opportunities to live full and productive lives. However, the disclosing individual still takes a risk, and following through takes significant consideration and courage (or, as in my case, an impulsive leap of faith).

In case readers are wondering about the title of this account, I will explain. When I worked with Pat Corrigan’s Chicago Consortium for Stigma Research, we invited Howard H. Goldman, M.D., Ph.D., the editor of this journal, to meet with the group. He talked about declaring a “Blue Hat Day” on which everyone who has ever used mental services would “come out” and wear a blue hat. I know a few of us in the room were thinking, “Great idea, but you go first.” Well, today is my Blue Hat Day.