Honesty hasn't come so easy to me. Growing up with a mentally ill mother who lied pathologically, I found myself unable and unwilling to lie even when it would have kept me safer than telling the truth. This earned me nicknames like "Goody-two-shoes" and "Mother Theresa" and prompted relatives to wonder if I was going to grow up to be a nun. (Nope, a rabbi's wife!) But like many people with invisible disabilities, and I imagine visible disabilities, I have learned all too well to cover. I often pretend to be healthier than I am all the time because I know that most of the time when people ask, "How are you doing?" they will tune me out if I tell them the truth or they'll (yawn!) accuse me of being negative when I'm just giving them my health "weather report." Don't ask if (quoting Jack Nicholson in "A Few Good Men")"you can't handle the truth!"
Lloolwa Khazoom, an Iraqi-American Jewess who writes the amazing "Dancing in Pain" blog, says this of covering when you're dealing with invisible disabilities:
The problem is that not only can’t people see my disability, but they also, for the most part, have not received awareness and sensitivity training in how invisible disability works – what it’s like to be in the mind, body, and spirit of the person who is disabled. So when I request disability accommodation, in the most polite, gentle, reasonable way possible, mind you, I still can be perceived as a pain in the ass, a control freak, a bitch, a “who does she think she is” type.
“The groundskeeper of my apartment complex hates me for being disabled,” I confided in someone I met at conference last month. “No, he hates you for having a voice about being disabled,” she replied. Good distinction.
The backlash wears me down, to the point that I am afraid to ask for accommodation. Because I don’t want to be perceived in the ways people end up perceiving me. So often in this world, rather than critique a system that is causing suffering, people condemn the person who is suffering and is strong enough to call attention to that system.
I really, REALLY want to hide out. The problem is, where?
Unlike Loolwa, I have found that often, I can hide at home...well, unless those insanely loud leaf blowers and lawn mowers are going. In some ways, I am lucky that I was a homebody as a kid--yes, even when my home life was so dangerous to my health and my mother often out of her chronic paranoia kept us home shut away from real life. Friends worry that I'm bored, especially those who remember how fast I used to move (like an out of control speeding train ala the new "Unstoppable" film) but thanks to technology, the UPS guy, an incredible local library, a Kindle and some wonderful friends and fans, I am rarely bored though I am still incredibly frustrated by all my new limitations and more so by the way they seem to make others uncomfortable.