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"But you don't look sick" is the name of a site that focuses on living life to the fullest while having a chronic illness. It's also a phrase that millions of people living with invisible chronic illnesses hear far too often. What are people thinking when they say that? Do they intend it as a backhanded comment? Or do they mean something else?
Chances are you've tried to explain what's really going on with you. But not everyone believes it: You could go back to work if you were willing to tough it out. You don't LOOK sick, so it must be all in your head ... or worse, you must be making it all up to get attention and a free disability check. So now you're not only stuck with constant pain, but you don't receive the support you'd get if you had diabetes, or multiple sclerosis, or some other "legitimate" disorder.
Lemon-aid has some suggestions about how to talk about invisible chronic illness.
Communicating about Illness is not easy. ( Finding appropriate words to say to someone in times of any adversity can be difficult for all of us.) The adversity of Chronic Illness, continues on indefinitely, making communicating about it even more complicated.
Many, many health bloggers are trying to spread awareness and support by bloggingfor Invisible Chronic Illnesses this week. What are "invisible chronic illnesses"? The sassy lime tells us:
nearly 1 in 2 Americans have an Invisible Illness. And 96% of illnesses are invisible. so the chances that you know someone with an invisible chronic illness? Really, really good. We’re talking about diabetes, cancer, depression, back pain, migraines (hello!), chrohn’s, etc., etc. I could go on and on
Bamagal was recently diagnosed with fibromyalgia and osteoarthritis:
As someone with a new diagnosis of fibromyalgia and osteoarthritis, I'm already receiving flack from friends and family who just don't "get it". The Bipolar, they understand. The severe seasonal depression they understand. But the chronic pain and complete lack of energy they are having a hard time accepting.
The Muse Asylum blogs about the stigma and skepticism of invisible chronic illnesses, like depression and anxiety.
My point was going to be that it’s a double whammy when you have an invisible chronic illness and that illness is psychiatric in nature. The first whammy is that it’s invisible;
The second whammy is “psychiatric in nature”.
Laurie asks what's in a word?
I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)
After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.
I could go on with these links or I could tell my own stories about living with a partner who has a invisible chronic illness but instead, I'd rather you tell your stories and share your links.
One of every two Americans has an invisible chronic illness... that means you, or someone you love - let's talk about what that's like, for you.
~~Denise
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