Stigma

The link below is a short article written for Psychology Today by "How to be Sick" author Toni Bernhard, J.D.

I love how personal and yet succinct this article is. Each time she reposts it I always go back and read it and it's always relevant.

http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome

 I've faced this myself, many times. Not so often with doctors because as someone without health insurance I don't actually get to go see doctors or to try new treatments. (I'm not going to go any farther with that because I am only frustrated and angry about it) But every time I try to explain to friends that I'm sick...or if a professor asks if there are any health problems that may interfere with my ability to do the work in class, yea, it comes up.

Sadly, I often recognize some inner shaming going on. It's almost like the disbelief and skepticism I see in another's eyes makes me question myself. I wonder if I'm really sick. (I'm blessed with some ability to have "normalcy" in that I work a job and go to school. It's not easy, of course, and the time when I'm not at work or not at school I'm in bed.) But sometimes I wonder, maybe I DO simply need more exercise, and what if I take an energy drink, yea....that will get me through a work out. And once I get through a few workouts then it will all be easier for me.

Right.

Then I remember that the last time I tried to work out I ended up in the worst relapse I've ever had and I still haven't recovered from it. (up until then it seems I was in a relapsing/remitting phase for approximately 12-15 years. Yea, I've been sick a long time) When I have activity outside of my envelope I get worse. My muscles don't work like everyone else's and pushing them only means I'll be in more pain and won't be able to continue with ADLs until I recover.

During social situations there is often the time where someone says, "We haven't seen you for a while, how come you don't get out more?" An honest question probably coming from a compassionate place....but for me it's a challenging one. I can't simply say, "I've been sick." because then they'll ask if I'm better now. And maybe this isn't someone that I want to share my whole health history with, maybe I'm feeling private that day, and so I take the cop out answer and dismissively say, "Oh, I've been really busy. You know how it is." Often that's the end of the conversations and I've escaped once again. If the person asking is someone I like, someone who maybe I think I'd like to spend time with sometime, I try the answer, "I have some challenges with chronic illness and sometimes it limits my activities." This feels more authentic to me, but I watch their reaction. Most don't know what to make of that so they withdraw and I shrug it off. But occasionally someone asks what the problem is. And then what the hell do I say. Casual conversation isn't really the place for a discussion like that. It's not really appropriate for me to "come out" about being sick. I can't describe the multi-symptom, complex, decades long illness in two sentences and feel authentic inside. I'll try saying I have M.E. but no one knows what that is and it only leads to more questions. But every time, no matter the situation, I find myself trying to avoid using the term "Chronic Fatigue Syndrome." Am I adding to the stigma? I don't know.