Wednesday, July 11, 2012

The Stigma of Chronic Illness

There's something about having a debilitating chronic illness that, for many of us, is something we try to hide from all but our closest friends and family.

And sometimes even from them.

Even if we don't try to keep the illness hidden, we minimize it, we make excuses for why we can't do something that our health doesn't allow us to do.

Why is that?

I've known two people with Type I Diabetes who kept it hidden until they had a health crisis they couldn't hide. The first, a college friend who, when asked why she hadn't told anyone in our circle of friends which included several nursing and pharmacy majors, said she was afraid we wouldn't like her if we knew she had diabetes. The other, a man I worked with, made me swear I wouldn't tell any of our co-workers.

It took me 20 years from that first episode in college to understand why someone might want to hide their health issues, whether from friends or employers or acquaintances.  It takes courage to be like Jenni Prokopy of fame or Laurie Edwards of A Chronic Dose, both of whom live their chronic lives out loud on the internet.

While I am fairly honest about what's going on in my life here on my blog, I do it with the knowledge that most of the people I come across in my daily life aren't going to bother to google me and find Sick Momma. Kind of like hiding in plain sight, I guess. :)

My friends know I have health issues. I allude to them on Facebook, and sometimes even whine there when I'm in a particularly bad place. But I rarely share the gritty details of the limitations I live with unless I'm forced to, like when we attended a children's theater with friends last month on a day I should have stayed in bed. After the play, they wanted to walk several long, and hilly, city blocks to get some frozen yogurt, and there I was in the awkward (and slightly panicky) position of trying to quietly let my husband know I couldn't do it. Another mom overheard part of the conversation and suddenly everyone wanted to know what was wrong, and I was in the position of trying to explain that my arrhythmia was causing major shortness of breath combined with intense fatigue and, well, I simply couldn't walk to the yogurt place. It sounds silly reading it here, but at the time it felt an awful lot like standing naked in a crowded room of well dressed people.

There's something intimate about sharing with others the various ways our bodies have broken down and no longer work properly. It means letting people see the man (or woman) behind the curtain, with all their human frailties showing. It means letting them see behind the social facade we all keep.

I can't help but think that there's a stigma attached to having chronic illness(es), that having health problems is a sign of weakness in our moral fiber, somehow. We celebrate cancer survivors, so why don't we celebrate people living with lupus or multiple sclerosis or any of a thousand other chronic illnesses? Why do people who are sick feel like it's something to be ashamed of, a personal failure?

This post was inspired by a NYT article on how people often keep their Parkinson's diagnosis a secret, sometimes even from spouses or children, and how that may be hampering the search for better treatments.