Many people have flexible or loose joints. They’re the people, maybe like you, who did gymnastics or ballet when they were young and are “good” at yoga. Their joints move farther and more easily than most people’s joints, so they often can do tricks like bending their thumbs forward until they touch their fore-arms. Sometimes these people are called “double-jointed,” and some may even have dislocated or popped their joints out of the socket. The medical term for joints that move too far ishypermobility, and the word for joints that are tooloose and move too easily islaxity…read more
Today I bumped into this blog post, I think it is well written and worth checking out
“Taboos don’t help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.”
Read more: Taboos
This is an interesting article, especially because I have been using a wheelchair since recently so I recognise some of the things. However, I don’t mind ‘special treatment’ itself, sometimes it’s needed in order not to get sicker (like the thing where the writer of the article is talking about the queue, I am not allowed to stand, so if I can avoid a queue that makes a massive difference for me)
I have a different problem, I have hidden my illness/disability for so long that now it has become obvious or when I need to talk about it I am extremely embarased. I can’t even tell why it embarrasses me, maybe it is because I was always told to not show and not tell (when I was a kid) And in times when I did, I had very negative reactions. That’s a long story, for another time, in the meantime, have a look at this article:
Read more: Special Treatment
Punctuation…. It makes all the difference!
An article that describes it exactly how it is! I so agree, the ‘mind over matter’ and all the positivity memes are damaging:
“They all had one thing in common that I found frustrating. They all focused so hard on “mind over matter” and positive attitude, leaving no room whatsoever for true feelings. They all emphasized that “you have MS, it does NOT have you.”
Frankly, that statement is bullshit. It makes me want to take my cane and beat people with it.”
I came across this article and I couldn’t agree more, I once was that teenager with POTS. Only difference is that the writer of this article does have a diagnosis and isn’t waved off by doctors all the time like I was. Looks like things have improved a bit in the medical sector, but not in Hollywood:
Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all.