I have decided the entry of the word psychosomatic into common parlance is a real curse for those with autoimmune disease. Having heard the word so many times, it's hard for me not to get really angry with people. I try to better explain Sjogren's to them, but it really gets me nowhere most of the time.
I need a quick and witty response prepared for the next time someone asks if my symptoms are psychosomatic so I can make them feel as bad for asking, as I do for hearing it. Would I be on medicines that lower my immunity for a psychosomatic condition? Unfortunately, I feel like I have to prove how sick I have been when someone asks me this question.
My most recent encounter was particularly hurtful because it was a friend whom I thought was understanding about my health. I wasn't feeling well, but really wanted to see her nonetheless; and it was a mistake. It always is. I have noticed when I don't feel well it is much better to cancel plans, but sometimes I still push myself. Even with many of my friends, I have found that I have to be "on" to deal with them and feeling sick and fatigued makes it harder to do that.
As I wrote about in a post on the complexities of Social Life and Autoimmune Disease, everyone wants to hear that their friend is doing better. When someone like many of those with autoimmune diseases, doesn't get "obviously" sick and then feels better or worse without a visible physical manifestation or a clear end point to their condition, it goes against what we expect. But that is still no excuse for anyone to minimize these very serious illnesses.
I am sad that this conversation happened because I am not sure that I will be able to move past it. Because asking me if my symptoms are psychosomatic is probably one of the worst things you can say to me. And just because you took college psychology or were in therapy for a year does not mean you know anything about my medical condition.
It still shocks me how few people know about autoimmune diseases given that estimates are that 50 million Americans are affected by them. It is clear that those of us with these diseases have to become the educators. It is hard being sick and then on top of that feeling like you have to prove it to others. Maybe my response next time will be that I wish my condition were psychosomatic, but unfortunately it is a serious illness that has already attacked my glands, nerves, and lungs just to name a few.
Have you encountered these tough and uncomfortable situations and how did you handle them?
Do you have any particularly good responses to those who doubt your illness?
