For the past two posts I’ve been trying to circle around this terrible stigma that hangs over Alzheimer’s disease and creates so much isolation and suffering. I’ve been trying to figure out what the stigma is. Why do people draw away? Why is this common disease such a mark of disgrace that brings shame and embarrassment to so many who are associated with it?
But after spending many hours on this post, I’ve decided I don’t really get it. I don’t personally experience the stigma or shame myself, and I don’t think I know much more than anyone else about why other people feel that way. I’ve gotten lots of comments, each offering different perspectives that may be part of it. As I wrote about in the first post of this series (Embarrassment (1)), people feel embarrassed because they don’t know what to say or do; they imagine themselves in similar situations and become afraid; perhaps they detest a human being who has lost control over himself. I don’t know any more than I’ve already written.
But let me tell you just one story about the stigma.
Even the word, apparently, is unspeakable.
A week after a lengthy feature article about my Alzheimer’s came out in the Washington Post, I was at a large function with many people who knew me fairly well, hadn’t previously known about my diagnosis, and yet had seen the paper.
Perhaps thirty people approached me to talk about “the article in the Post.” They referred to “your condition,” they asked “how are you doing,” or said to me “how courageous you are,” but not a single person among the thirty mentioned the word “Alzheimer’s.” I knew I had Alzheimer’s; they knew I had Alzheimer’s; I knew that they knew; they knew that I knew, but the word itself remained unspoken.