A client who lives with MS told me that he wishes he was Clark Kent. With the slip of a cape, he’d become his real self: Superman! And then his left leg work wouldn’t drag, his right hand would grip properly and he’d walk to his car minus the cane.
No one would have believed Clark’s truth – but in his case, the fact that Superman, his “real” self, was invisible was a plus.
But people with chronic illness can’t throw on a cape on so that people will believe that they are what they say. Luckily for many of us, there are tests that prove we have diseases: blood tests (diabetes), different types of x rays, (heart disease) mri’s (MS) and cat scans (cancer, spinal problems).
Look, even with evidence, people can act as if you’re a fraud. Especially if they think you’re trying to get out of doing work – or something silly like that 🙂
And, diseases such as Fibromyalgia — a disease that is only confirmed by a patient’s experience– gets this response a lot. Still, I was surprised by this coverage in the The New York Times article (Drug Approved. Is Disease Real) .
I read it and cringed. I know what it feels like when people think a disease is “all in your head”. 30 years ago when I was diagnosed with MS, the MRI didn’t exist and there weren’t conclusive tests. I had a boss who said that he wondered if a neurological disease was just another word for plain crazy.
Jenni at chronicbabe.com wrote (New York Times, fibromyalgia, lyrica and truth) a compelling response – a letter to the editor – and posted it. Read it.
What do you think? Does it make you mad when people at work doubt or make harsh generalizations about your illness? Have you had to listen to comments that seem unkind, stupid or downright prejudiced?
Here are 3 things to think about before you respond:
1. When it’s in a public forum, like The New York Times, you’ve got nothing to lose by voicing your opinion. Even if they don’t print it, they’ll think twice about writing a similar article again.
2. If it’s a friend or a loved one, make your thoughts and feelings known — for the good of the relationship over the long haul.
3. But when it’s a work relationship, pick your battles. People have all kinds of reasons for “not believing your sick”. When you sense that’s the case, you’re better off putting your energy toward figuring out what they’re really angry at. And figuring out what you can do about that. Remember, at work, it’s deliverables that matters – not beliefs!