Elaine Benton is my guest blogger for today and she corroborates the fact that many people do not know how to talk to those with disabilities of any kind. I overheard a woman say: “I believe that X is suffering from a mental illness, but, I can’t see anything wrong, can you?”
“Invisible Chronic Disease”
I’ve lost count of how many times people have said to me; “you don’t look disabled”. What exactly do people expect a disabled person to look like? I presume the number one criteria is being in a wheelchair – after all if you can’t walk, then you MUST be disabled. However it is not as simple and clear cut as this, and there are many chronic patients suffering an array of various diseases, where they appear like everyone else. Whether someone suffers from Gaucher disease, Parkinson’s or Schizophrenia, the visual signs of illness are not always blatantly clear and easy to see. I always say: “never judge a book by its cover!” It’s not a matter of an ill person giving the false impression of being well, but the other way around, that there is a predisposed idea of what an ill person should look like. Only those diseases where visually one can see a physical disability, do people immediately acknowledge the person as being ill, since they fit neatly into their prejudiced category. But when someone for instance, looks like me, it generally confuses people’s concept of chronic disease. In their minds I shouldn’t look like I do. This biased view is both irritating and frustrating, particularly when someone says to me: “but you look so well”. I wonder what I’m supposed to look like to satisfy those who do not understand. Maybe I need to wear a badge indicating how I suffer daily, am in constant discomfort, take morphine for excruciating bone pain, am tired beyond the point of exhaustion and am just about holding it together. But what really throws a spanner in the works is that I have the audacity to smile and be cheerful – this is something that most people, including doctors cannot understand.
Written by Elaine Benton, author of “Parkinson’s, shaken not stirred” www.elainebenton.net