Before modern treatments, many sufferers were just shut away in a hospital or in their own homes. Families were too embarrassed to speak about them. My great-grandmother was placed in an asylum in Victorian England. She wasn’t allowed to see her children for the last 20 years of her life. She died alone, consumed by an illness once called ‘dementia praecox’.
I was just five years old when my mother became mentally ill after the birth of my youngest sister. I can just barely remember how things were before she became ill. With a family history of mental illness, I grew up fearing that I would develop schizophrenia. When I passed my 30th birthday, I thought I was safe. I was wrong. I vaguely remember being wheeled into the hospital under the large sign that said, ‘Psychiatry.’
I thought my life was over. I’m glad I was also wrong about that.
Our society does not fully understand mental illness. Stigma exists on many levels. Many people with mental illness refuse to tell potential employers or landlords about it. While their condition may need only simple adaptations, employment problems can arise if a relapse happens, especially on the job.
Other types of stigma are much more damaging in the long run. When I come into the clinic twice a month to receive my injection, I am often assigned to whichever new resident is on duty. Every time, I am asked if I feel like harming myself or someone else. I understand that this is necessary. Still, I have never been violent in that way, or consciously gone off my medication in the 18 years since I was first diagnosed. I guess I thought that at some point, I would be accepted as being stable, and they would stop asking such hurtful questions.
When my wife became pregnant, a member of my regular health care team suggested that she have an abortion. He didn’t think that someone with my illness should raise children. My devoutly catholic wife was quite angry, but I was just sad. He wasn’t the first. If health care professionals act in this manner, what hope do we have for those who aren’t trained to understand mental illnesses? As it turned out my wife had a miscarriage and we do not have any children.
Not long after I was first diagnosed, a family member suggested that I be sterilized. Serious mental illnesses run in my family, and that’s why she made the suggestion, but it still hurts me deeply to even think about it. We all have the same desires for our lives after becoming ill. Everyone with mental illness shares the overwhelming wish to be normal again - if there is such a thing.
Stigma from family members can come in many forms. Some masquerade as concern. Often after first diagnosis, we must depend on our families as we adjust to a new reality and get stabilized on medication. Eventually, just as a mother bird pushes her chicks out of the nest, our families must let us learn to live on our own. It may seem easier to have us living at home, making decisions for us. Still, treating us as if we are no longer capable of independent living, or even independent thought, does more harm than good. It reinforces the idea that those with mental illness should be locked away from society.
Perhaps we place the most insidious form of stigma on ourselves. Pretending we aren’t ill, especially refusing to take our medication properly, does the most harm. I know people who are desperate to live their lives without anyone knowing they are ill. Twenty five per cent of people who experience a psychotic episode can recover and eventually go safely off their medication. When someone does recover in this way, they rarely tell people about it. If they mention the episode at all, they may say they had been misdiagnosed. Compare that to people in remission from cancer. While most rejoice in being cancer-free, they know it could happen again at any time. They aren’t afraid to say they have been ill, and often publicly rejoice in their regained health. For those of us with mental illnesses, our first impulse is to hide, even from ourselves.
So, how do we fight stigma? We can only fight it with education, and being as public as we can. It’s not easy being the public face of such a frightening illness. When a story breaks on the news of someone committing a gruesome murder, or some other bizarre crime, I know that my phone will ring for comment. Although we are much more likely to hurt ourselves, when we do act out, it usually hits the front page. I often wish more celebrities would come out publicly about their fights with mental illness. Perhaps one day a TV character on a sitcom will have schizophrenia or bipolar disorder. Normally characters with mental illness are on crime shows, not those showing more normal situations. The character of Kramer on Seinfeld exhibits many symptoms of bipolar illness (once called manic depression). Imagine the difference that having this character reveal his mental illness might have made. I long for the time when someone with controlled mental illness could be elected to public office but the social stigma would likely preclude that from happening now. Even second world war British prime minister, Sir Winston Churchill, whose battle with depression (which he called his “black dog”) is well documented, would not likely be electable given today’s public scrutiny of all aspects of a candidate’s background.
Stigma can have a bright side. I’m told that only those who have walked through the deep valley can appreciate how high the mountains truly are once they are scaled. When I first met my future wife, I was terrified to tell her that I had an illness. So many women ran away when they discovered that I carry the scarlet S of schizophrenia. When I finally got up my nerve, she was unconcerned and unafraid. I thought at first she simply didn’t understand. Instead, she is one of those rare individuals who can separate the person from their illness. To her it is the same as being married to someone with diabetes. Both require a lifetime of medication, monitoring, and occasional hospitalizations. Without the weight of a lifetime of stigma on my shoulders, I wouldn’t realize how truly special she is.