“Hello, Aunt Edna.”
Pause. “How are you?”
“I didn’t…” pause, “when they were there, you know.” Awkward pause. “It’s because of me they put the flowers in across the street.”
Me. “What flowers?”
Pause. “They know I’m contagious. That’s why.”
“Why what, Aunt Edna?”
“Why they put the flowers in. The flowers are cameras. That’s why they put them in, because I’m contagious. So they can watch me, when I’m near the kids. I don’t go to the park.” Pause. “It’s in my sweat. Don’t touch my sweat, or they’ll know what you think.”
The above conversation is the kind I used to have with my Great Aunt Edna. She had schizophrenia, but we didn’t know that until later in life. She was undiagnosed for many reasons, but the largest had to be social stigma. My grandmother, Dorothy, surely knew something was wrong, but I’m not aware of her ever saying anything except “just talk to her for a while.” It was as if we were all saying, ‘ignore it, and it’ll go away.’
She was old when I knew her first in the ’70’s. The awkward phone calls happened in the ’80’s, but she had been sick long before I was born.
She was born in 1921 just after World War I and so she was about eight years old when the Great Depression happened. Her teens and early twenties were consumed with surviving the Depression, then World War II. She might have developed schizophrenia anyway, but being a young woman in your late teens – when schizophrenia starts to surface for most people – and having to suffer the added stress of unemployment and war may have been a factor in triggering her condition. My father also told me she was serious with a young man, who then ditched her for another girl. This he believed was the shock that pushed her over the edge. We will never know because all the people who might have known are dead now.
Sigmund Freud had started his work more than 30 years before she was born, and by the 1940’s, psychiatrists understood a great deal about the disorder. It’s not like she couldn’t have been diagnosed. Not too many years later the first functional antipsychotic drugs came on the market. So why did she go untreated?
Mental illness has such a stigma even now, in 2013, that I’m amazed we don’t face even more denial and avoidance than we already do. But our culture still faces a huge barrier. The distance between the illness and the conversation about the illness is great. It’s one thing to say you have high blood pressure (I do), but quite another thing to say you have mental illness of some form (I have in the past). Even there I feel the need to tell you which disorder I have suffered with because it’s not a “bad” one – like if I told you I had a serious disorder you might not read any further. The stigma is everywhere.
There are many uncomfortable taboos our culture today. I see them in a sort of progression of complexity and awkwardness. First is illness in general. If you have a cold, you probably don’t mind saying you have a cold. I don’t. But I’ve known people who feel it makes them weak in some way to admit they are sick. More dangerous illnesses are increasingly likely to run up against this first stigma level.
The next level of stigma would be physical abnormalities. I was waiting in a line today, and a young woman in front of me drew much attention because she had some form of dwarfism. People didn’t want to stare, but stare they did. Sidelong, when she wasn’t looking, but they couldn’t wrest their eyes away from her. People with movement disorders such as Parkinson’s disease fall into this category, along with amputees and people with other severe disfigurements (thus the rise of face transplants in recent medical news). These conditions are not “normal” – only meaning they aren’t something we see every day – and thus the social scripts we use to interact with others don’t fit these unusual circumstances.
The third – and worst – level of stigma is mental illness. Why? People say all kinds of things, from a macho “get over it” to the extreme view that mental illness is a sign of demonic possession. There are many other taboos regarding mental illness that I’m not familiar with. Some cultures still lock up their “abnormal” citizens – not in a hospital where they might receive treatment, but just in a jail. In fact, this is common in America today, with some estimates putting the number of mentally ill convicts in our prisons as high as 50% or more of the total population. A little research here would probably open your eyes. It’s not like we don’t know how to treat mental illness – in fact, there are more options available now than ever before – but there is no funding and, of course, the stigma.
So what do we do? My great aunt lived into old age with this disorder, and was only treated in the last few years of her life when she went into a state-funded nursing home. She lived decades with a fractured mind, and I’m sure she wasn’t a happy woman. She never married, never had children, worked a menial labor job in the Just Born Candy Company factory boxing chocolates. She had no aspirations, no dreams that I know of, no hope. She just struggled through one day after another, trying to make sense of the confusing thoughts and threatening voices that filled her mind. She was never violent (most schizophrenics aren’t, by the way), just sad, lonely and disturbed.
And we all paid for it. She might have written poetry, like Anne Sexton did, or painted, like Van Gogh did – both people with profound mental illness, and both people who added beauty to the world. The world is dimmer for the way she was treated, the way she fell through the cracks. Please, do what you can to confront this difficult issue. Even just talking openly about mental illness can help. Don’t judge, don’t poke fun, but talk about it. Take it seriously, and share any stories you may have. If you don’t now, you will eventually, because at least 25% of us will confront mental illness ourselves sometimes in our lives, which means if it’s not you, it will affect someone you love. See that you’re ready for that conversation when it comes.