FM Patient Won't Apologize for Having Fun Once in a While

[Cort]

I love this blog

She went to a theme park and was very sedentary - she just wanted to be there - and got whacked by a family friend who found out.

Then she started looking over her shoulder.

Eventually she decided it was ridiculous. Life is hard enough without having to worry about someone slamming you for having fun once in a while...

http://fibrowomen.com/i-wont-apologize-for-having-fun-while-chronically-ill/

I’m not sure what these people think we’re supposed to do every day. We have incurable chronic illnesses. We often spend most of our time either at home or in treatment as it is. We’re often exhausted and in a lot of pain. If we’re not able to work full time, are we supposed to forgo any and all moments of joy, distraction, social interaction or enjoyment? Will that help us in any way? Being sick is extremely hard for many of us. It’s even harder when hurtful, judgmental types decide that illness should invalidate the fact that we have the same needs as anyone else. Instead of telling chronically ill individuals to shake off comments and accusations, maybe the onus should be on these hecklers to refrain from making them and mind their business. Is it really that hard to leave other people alone?​

 

[Paw]

This is such a weird, thorny problem -- seen in so many manifestations. Like people with disabled parking permits getting yelled at because they "seem" fine. After reading one such story the other day, half the comments were from people convinced that most permits were given to cheaters. There was even some division between some "legitimately" handicapped permit users calling out the "abusers" they think they see.

It seems people are just too uncomfortable looking at illness and disease as a multifaceted way of life. They're real good with fighter narratives; e.g. someone who kicks cancer, grows their hair back, and continues to kick ass in life. But any disease that demands management, acceptance, patience is too grotesque. Much better, they think, that we die fighting than abide a less-than full life. Otherwise we're just taking up valuable parking spaces.

So their default mode is to be on the lookout for "proof" of fraud, rather than trying to understand what they are seeing.

If someone isn't visibly suffering she's just being a drama queen, trying to exploit the same aches and pains and fatigues that everyone endures. It's not fair, so she should be called out for her cheating!

Meanwhile, we seek lives that accommodate the ups and downs of our disease. We don't want to get lured into unnecessarily projecting "disease behavior" just for the sake of appearances. When I am able, I mow the lawn. When something's funny I laugh. But there's a cost: people are 99% less likely to take an interest in understanding such incongruities than they are to dismiss spectrum debilitation as hysteria, whinyness, or some sort of corruption.

 

[Cort]

It is a weird phenomenon - this belief - really this kind of desire - that many people are cheating..

My ex-girlfriend is a big strong looking woman who's probably had 7 back surgeries by now. She was actually confronted by a airline ticket taker who didn't believe she was disabled. She actually pulled up the back of her shirt to show all her scars.

It just leaves people afraid to go out and do things.