Speaking Out on Schizoaffective Disorder

Mental illnesses are too often shrouded in secrecy and shame. What would happen if we spoke out about the cases we knew best—the ones in our own families?

COMMENTARY

My daughter has schizoaffective disorder. She fell ill at age 15 and had to be hospitalized twice. It was a terrible time for all of us, but today, I am happy to say, she is doing well. She graduated from a highly competitive college, got married, and writes amazing poetry and fiction. She still has delusions, but quietly so, and has developed a clear understanding of her illness and the necessity of mood stabilizers, though she still refuses antipsychotics. Why am I revealing the facts of my daughter’s illness in a public forum? In a word, stigma.

As a psychiatrist, I help patients and their families deal with stigma all the time. Having faced stigma in my own life, I know how upsetting it can be. When my daughter was hospitalized (at my institution), several well-meaning individuals told me how brave I was to allow that to happen. Whenever I heard that, I appreciated the sentiment, but also thought that nobody would have called me brave if my daughter had a brain tumor. Apparently it takes courage to reveal to your colleagues, even to your psychiatric colleagues, that your child is mentally ill—as if a serious mental illness in a child or relative is something to be hidden, not discussed. Through the worst of her illness, I lost a few friends who were uncomfortable with the fact that I had a mentally ill child. Some family members hid what was happening from others, I think out of a sense of shame and embarrassment.

Why is mental illness still considered shameful? At least part of the stigma arises because we do not entirely understand what causes mental illness, and because those with mental illness sometimes behave in baffling or even dangerous ways. On the other hand, many members of the public do not understand the gravity of mental illness. They believe that patients with depression, for example, just need to pull their socks up and get on with life.1,2 Finally, part of the stigma is a society level problem that humans tend to marginalize anyone who looks, acts, or thinks differently.

Widespread stigma and misunderstandings can have terrible consequences for patients. As a psychiatrist who specializes in treating psychiatric illness during and after pregnancy, I see them every day in my professional life. Every week I see patients whose doctors advised them to come off their psychiatric medications for pregnancy, not taking into account the severity of their illness, or the impact of untreated psychiatric illness on the developing child. I have patients and families who ask whether they should have children in the first place, as if someone with a mental illness cannot also be a nurturing and loving parent. It took until 2016 for the US Preventative Taskforce to recommend depression screening for pregnant and postpartum women, even though peripartum depression is the most common complication of childbirth.3

It is time to stop whispering and to start speaking out. The fact is that most, if not all, of us have family members who have struggled with some form of mental illness, and these numbers are only increasing during the pandemic. Across the world, 792 million people have mental health problems, and 1 in 7 individuals will experience a mental health or a substance abuse issue at some point in their lifetime.4 How can we continue to stigmatize something that is so common normal?

There are signs of change. A number of organizations are leading conversations about mental illness, educating the public, and speaking out about stigma. These include but are not limited to: Active Minds and Time to Change. These organizations argue that the more we talk about mental illness as a common condition needing treatment, the more other individuals and families with mental illness will speak out too, and stigma will be reduced.

I believe this is the right approach. It is going to take regular doctors and patients speaking out routinely and treating mental illness like any other disease or condition. It is something that needs to be identified and treated, not something to be ashamed of. Discussing mental illness should be commonplace, like talking about diet and exercise and one’s cholesterol level. Only then can we dispel the stigma, support those who need help, and get them the care and treatments they deserve.

I have been open and frank with colleagues, friends, family, and strangers at times. I ask you to join me. Let’s tell the public that mental illness is common, treatable, and we all have been touched by it in one way or another. For the sake of our patients and ourselves, we need to do more to end the stigma of mental illness. Isn’t it past time?

Dr Payne is professor of Psychiatry and Vice Chair of Research in the Department of Psychiatry and Neurobehavioral Sciences at the University of Virginia, Charlottesville, VA. Dr Payne and her daughter have published a long podcast conversation about their personal experiences of having or treating mental illness.

References

1. Do you know the facts? Breaking down the myths about depression. Back to Campus: A Program of Mental Health America. Accessed September 14, 2021. https://mhanational.org/sites/default/files/Breaking_Down_the_Myths_About_Depression.pdf

2. Beharry J. 5 myths that prevent men from fighting depression. National Alliance on Mental Illness. March 23, 2018. Accessed September 14, 2021.

3. Toohey J. Depression during pregnancy and postpartum. Clin Obstet Gynecol. 2012;55(3):788-797.

4. Dattani S, Ritchie H, Roser M. Mental health. Our World in Data. April 2018. Updated August 2021. Accessed September 14, 2021. https://ourworldindata.org/mental-health