This Labor Day has brought back a gloomy memory. “You’ve failed at everything you’ve ever done, Daddy, and you’ve been sick all of my life.” Those stinging words came from my then 27-year-old son. He regretted saying that to me and apologized the next day. My son was struggling with his own challenges and needed me to be stable for him. My reaction to his harsh words about failure and sickness? I said nothing, because I knew he was right.
I was 53, unemployed and homeless. My son had taken me in to live with him in the bedroom he rented in another person’s apartment. He refused to let me move into a homeless shelter after the woman with whom I had been living the previous seven years “dismissed” me from her life. She told me she was kicking me out because she could no longer live with my mood swings.
The psychiatrist who diagnosed me with bipolar disorder in 1993 never told me about the cognitive limitations — such as learning new skills — some people with the illness experience. Nor did he tell me about the side effects of the medication he prescribed. Those side effects included difficulty in concentrating and weight gain. Five years before I was diagnosed, I went from being a college professor to a hospital emergency room janitor within a year. After diagnosis, I was briefly a radio announcer, technical writer in the Silicon Valley, technical writing instructor for UC Berkeley Extension and, finally, several telemarketing positions. All of my jobs ended with termination because I couldn’t remember instructions on how to do the work.
I gave up on my working life a few months before my 60th birthday and applied for Social Security disability. I have been emotionally stable since 2010 by carefully managing my illness with adequate sleep, a healthy diet, exercise and psychotherapy when needed. I remarried, too. I now work for myself as a writer and speaker on mental illness.
My experience in the world of work isn’t isolated. The Depression and Bipolar Support Alliance (DBSA) reported that nine out of every 10 people with bipolar disorder said the illness had affected their job performance. More than half surveyed said they thought they had to change jobs or careers more often than others. Many felt they were either given less responsibility or passed up for promotions because of their illness.
Approximately 60 percent of the 7.1 million people receiving public mental health services nationwide want to work, but less than two percent receive supported employment opportunities provided by states.
I live in California where the unemployment rate for persons with a mental illness is 90 percent.
What could I have done to change the course of my working years? I would have been in a Catch-22 had I admitted my illness to an employer and asked for accommodations under the Americans with Disabilities Act (ADA). That’s because half of U.S. employers surveyed are reluctant to hire someone with a past psychiatric history or currently undergoing treatment for depression. Half would rarely employ someone with a psychiatric disability, and almost a quarter would dismiss someone who had not disclosed a mental illness.
The majority of people with mental disorders identify employment discrimination as one of their most frequent stigma experiences.
In Canada, 78 percent of mental health consumers participating in a membership survey conducted by the Canadian Mental Health Association identified employment as one of the areas most affected by stigma.
Fear of stigma is why I never told an employer about my illness. Under the ADA, I could have asked for specific accommodations to help make me a better employee. I needed a work area with few distractions, written job instructions and permitted frequent absences for doctor’s appointments.
In order to avoid workplace stigma and discrimination, employees with mental health problems will usually go to great lengths to ensure that co-workers and managers do not find out about their illness. They avoid employee assistance programs and shun effective treatment options such as psychotherapy.
I learned in 2015 that my bipolar disorder’s impact on work performance had been further complicated by multiple sclerosis (MS), a disease of the central nervous system. My neurologist said the MS probably started in my late 20s or early 30s since it usually strikes young adults. The hidden symptom of MS is cognitive impairment that made it difficult for me to learn new skills.
The irony is that it would have been far easier to tell an employer about my MS and get reasonable accommodations than tell him or her that I have a mental illness. Multiple sclerosis is a physical disease, after all, and garners sympathy. Bipolar disorder is a mental illness and people with it are marginalized mostly out of ignorance. I have two neurological disorders, but they are viewed differently by “normal” people. The impact of work failures on my life was heartbreaking for me and for my son and daughter.
My MS is progressive rather than the more common relapsing. That means it will worsen and there is no effective treatment. I am legally blind and need to use a cane occasionally. My doctor told me that as MS affects more of my brain, I will no longer be able to move or speak one day. I’m determined, however, now that I am now in my mid-60s to continue writing and speaking about mental illness despite physical limitations.
When I shared an update about the MS diagnosis with my now nearly 40-year-old son, he wrote: “People think athletes are the models to emulate. But it is people with a ‘life plate’ such as yours that are the true star athletes in life!”
“Thank you, son” I wrote. “I love you.”