I’ve just discovered (hat tip, MindHacks) a series of moving articles in which individuals with various mental illnesses describe receiving their diagnosis. The articles were published last August in a special open-access issue of the Journal of Mental Health, which focused on diagnosing mental illness.
The British fantasy novelist Terry Pratchett (Discworld series) wrote one of the articles. He was diagnosed a few years ago with posterior cortical atrophy, an unusual form of Alzheimer’s disease that affects vision as well as memory. Here’s Pratchett’s description [with British spelling and punctuation intact] of how he felt the day he received his diagnosis:
When in Paradise Lost Milton’s Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt that day. I felt totally alone, with the world receding from me in every direction and you could have used my anger to weld steel. Only my family and the fact I had fans in the medical profession, who gave me useful advice, got me through that moment. I feel very sorry for, and angry on behalf of, the people who don’t have the easy ride I had.
And here is Pratchett talking about his decision to go public with his illness:
It is a strange life when you “come out”. People get embarrassed, lower their voices, get lost for words. Fifty per cent of Britons think there is a stigma surrounding dementia but only 25% think there is still a stigma associated with cancer. It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer’s you are an old fart. That’s how people see you. It makes you feel quite alone. It seems to me there’s hardly one family in this country that is not touched by the disease somehow. But people don’t talk about it because it is so frightening. I swear that people think that if they say the word they’re summoning the demon. It used to be the same with cancer.
Another article in this series is a Q&A with a former prime minister of Norway, Kjell Magne Bondevik, who took a four-week leave of absence from his governmental duties in 1998 to recuperate from a severe episode of depression. Here’s Bondevik talking about how he came to be diagnosed:
During the summer of 1998 I felt more and more sad. I lost energy. It was more and more difficult to concentrate, it was more and more difficult to sleep. I thought that my summer holiday would make things better, but that didn’t happen. When I started work again with no improvement I suspected something was really wrong; I was very, very anxious, all the time, but I still thought that perhaps a break would help. I went for a week to my summer house, but instead I became more exhausted and one day I just could not get out of bed – my mental state had affected my physical state.
My wife was very worried and called a friend, who came to my home, bringing a psychiatrist and also the minister of foreign affairs, who was a close friend as well. The three of them physically got me out of bed. I went into a separate room with the psychiatrist, and talked to him about my feelings and sense of anxiety. After a short time he told me that I had a depressive reaction.
His fellow Norwegians were remarkably compassionate when they learned of his illness:
Of course to begin with I was not in a mental state — or indeed in a physical position — to watch or listen to the news or read the papers. I went with my doctor to a cottage in the Norwegian mountains, far away from all media. But after a few weeks I began to take an interest in the public reactions and my staff told me about the favourable responses. Of course there were exceptions. One or two newspapers and some politicians were not positive, but this changed in light of the public sympathy for my condition.
During this period of 4 weeks I received more than a 1,000 letters — in a small country like Norway, that’s a lot — mostly from ordinary people. All were positive, and what was so encouraging was that many wrote saying that they were in a similar situation; they had or had had mental health problems themselves; and when I was open they also chose to be open; in many cases they had started to talk to their families, to friends, to go to a doctor—the starting point for recover. I got so many messages saying that my openness had helped others, that this in itself became part of my own recovery. I understood that I had helped others and that helped me.
In another of the articles, Massachusetts pediatrician and memoirist Mark Vonnegut, son of the late novelist Kurt Vonnegut, Jr., describes the four psychotic episodes he experienced as a young man — and how he vowed to become an advocate for the mentally ill if he survived his own illness:
My first episode was in 1971. I believe I would have gone crazy eventually regardless of outside events although they were very crazy times. The assassinations of JFK, MLK, RFK. Kent State, the music, the drugs, the counter culture … my father was magically transformed from a not very good car salesman who could not get a job teaching English at Cape Cod Community College to a guru super star. By the time I started hearing voices so many other unlikely things had happened it did not seem out of line. I assumed everyone was hearing voices.
There are many people who fully recover from major psychotic episodes and go on to live full rich lives. Most of them choose to keep quiet about it. In the middle of my illness when I was far from sure that I would survive, I made a promise to remember and tell the truth as best I could about whatever it was that was happening to me. I think it helped.
We don’t talk enough — in an informed, compassionate way — about mental illness in the United States. These articles are a good starting place. You can read them all here.
Excellent article, Susan — thanks for posting it. I agree with your conclusion.