Stigma a mark of disgrace associated with a particular circumstance, quality, or person.
English Oxford Living Dictionaries
When first diagnosed with fibromyalgia I had a hard time accepting life with an invisible illness. I’d been working as a community health nurse and witnessed first-hand the challenges that patients with chronic illnesses faced.
In 2002 many doctors didn’t believe fibro was a legitimate physical illness. They thought it was a psychological condition. As for the general public, most people didn’t believe fibro was a legitimate illness. I was ashamed and didn’t want to go out in public.
On the rare occasions that I did venture out I was reluctant to talk about my health. I realize now that I’m describing stigma. We refer to stigma a lot these days, but 16 years ago I hadn’t heard about it.
When asked how I was feeling I’d admit that I wasn’t feeling well. Some people were sympathetic and some said “But you look great!”
YOU LOOK GREAT? … What I heard was “You don’t look sick”. I was so concerned about what people thought about me that it blocked me from managing my condition. I couldn’t move forward until I accepted my situation. This is what I struggled with most.
I needed help!
I made an appointment with a psychologist. He was helpful although direct. But I needed a reality check. He told me that people were so busy with their lives that they weren’t thinking about mine. He was spot on.
I’d become hyper focused because I was home all the time with nothing else to do but think about myself and my condition.
I began going out more and I tried hard not to concern myself about what other people thought of me. It was difficult at first but I started to notice a change. I wasn’t as anxious and was able to start self-managing and taking part in family outings.
And looking back I realize that when people said “you look great” they were being kind.
There have been challenges over the years. For example, on one occasion I was grocery shopping with my young son and we parked in a disability parking spot. A woman gave us a clearly disapproving stare in spite of the fact that I had a parking permit. My son approached the woman and said “my mom has fibromyalgia!” I felt badly that my son felt he had to defend his mom, but he looked proud.
It has been frustrating. But I have learned several strategies that work for me.
Remember you can’t control the reaction of others but you can control your reaction.
When you find yourself in an uncomfortable situation, politely excuse yourself. You don’t owe anyone an explanation.
I’ve been living with chronic illness for 16 years. Attitudes towards disability are changing gradually and we can be part of this change. To do this we should take part in our communities and make our voices heard.
I’ve also learned that the best person to educate people about stigma is me, but only if people are ready and willing to learn. Otherwise I quietly walk away and save my energy for someone else or something else. I have plenty of other things to do.
How do you deal with the stigma of chronic illness?