Mental Illness is a Lonely Battle
Some years ago, I attended a special event. More than 125 men and women, all struggling with a serious psychiatric illness, gathered for a day of sharing and discussion. Organized by a group of mentally ill patients and ex-patients, all the panels and speeches were given by adults with psychiatric disabilities. I was the only mental health professional invited to share in this celebration. It was an honor that I have not forgotten.
The panelists, all of whom suffered from long-term mental illness, spoke of their struggle to overcome stigma and prejudice. They spoke of their hospitalizations, their struggle to find the right medications with the least amount of side effects, their challenges with weight gain brought on by these drugs, and their desire to have meaningful work and relationships. Many of the participants came from hospitals, day treatment programs, and group residential programs to hear each other speak.
Jill, a 21-year-old woman with a long history of hospitalizations, told her story. She worked at a fast-food restaurant. Her employer told her she was a “nut case”. He wouldn’t let her arrange her schedule to see her doctor. She filed a law suit, and her supervisor was fired for discrimination. The audience basked in the glow of this small victory.
Bill, a large man in his 40’s, spoke softly; “I am afraid I will go back to the hospital. I’m going into that dark tunnel again. This time I worry that I will never get out…” Bill talked for a long time. The other participants in the room responded with great love and compassion. “We know how this is,” they answered---“We have struggled with our illness, and we know what you feel.” Sometime later, a conference speaker asked the assembly, “Who are we? As a people struggling with a disability, what are our special strengths?”
Bill walked slowly to the open microphone. Now his voice was strong and clear. “No one knows what we go through,” he stated. “We are a strong people. We are a beautiful people. We have been hospitalized. We suffer in ways that only we understand. But we have strong spirits and we can help each other.” The audience answered Bill with thundering applause. There was not a dry eye in the group, including mine.
In those years, I devoted a substantial amount of my professional time helping individuals who battle long-term psychiatric disabilities. These disabilities, including schizophrenia and bi-polar disorder are more common than most people think. Schizophrenia occurs in about .5% of the population world-wide. The National Institute of Mental Health estimated that close to 1% of the population suffers from a mental illness severe enough to require hospitalization.
But these statistics do not reveal the lived experience of mental illness. People with persistent and serious mental illness face immense barriers. The most severely disabled adults live on $700 a month—the amount they receive from Social Security Income (SSI). Poverty, with its lack of opportunities, is one of the social by-products of psychiatric illness.
If you visit a patient in a psychiatric unit today, you will not see bouquets of flowers on bed stands. Baskets of fruit, so common in general hospitals, do not grace these halls. Get well cards are not pinned to the wall. And, there are few visitors. The stigma of mental illness is still alive and well today.
Individuals with psychiatric disabilities are our friends, neighbors, co-workers, and acquaintances. They are a people who struggle with the episodic effects of their condition—hallucinations for some, confusion, fear, and depression. But even more debilitating are the effects of poverty, discrimination, and neglect. Neither they, nor their families, caused these illnesses. Let us open our hearts and reach out to these neighbors.