I feel lucky. I always struggled with that moment when I felt that I had to say to someone I’d just met that I have disabilities from chronic illnesses. I mean, what’s the right time? When a new friend asks me if I can attend an event outside on a 100 degree day? Maybe it’s when I’ve been standing on my feet at the party too long and if I don’t sit soon, I’ll fall down because my feet are like broken sticks? Or better still, when I stumble standing up from dinner and it looks like I’ve had too much to drink? Then there are those times when I’ve thought: I’ve known this person for a while and never mentioned I’ve lived with illnesses — and if I don’t bring it up soon, when I do, it will seem shady, as if I’m hiding something.
How do you slip it into a conversation that I’m not the way I look?
I know that on one level the good news is that no matter how sick I’ve been, I haven’t ever looked too bad. Even I could see that in pictures, I usually looked “”fine” (meaning, you couldn’t see my bad bladder, aching belly & loose stool, numb body, painful feet, extreme fatigue….need I go on?) no matter how I felt.
And, now that I’m healthier than in almost 30 years, my face has more color, my skin is brighter and my gait is smoother than when I was in my 20’s (well, almost). But, I still have disabilities.
So, what makes me say I’m lucky? Because now when I meet people in a work or even social situation, one of the first questions is, “What do you do, Rosalind?” And, I get to say,”I work, as as a coach, with people who live with chronic illness to stay successfully employed.” I get the look of surprise (it’s not exactly a common job title) and then, inevitably, I’m asked about my background — or qualifications.
And, that’s when I get to neatly slide in the line, “I’ve lived with chronic illnesses for 30 years. You could say I have an MBA in it.”  The 2nd sentence gets a smile – so I also get to lighten it up, a bit. Funny how this feels good.
Rosalind
Joan C says
I like the line about “You could say I have an MBA in it”. I’ve only had MS for 21 years. All of the medical literature shows bright young things with 5 or 6 years of active MS. I’ve done OK and manage as best as I can for years. Life is uncertain even without chronic illness. I just know more about my uncertainty.
Rosalind says
Joan, You said it. We just know more about certain topics and learned it the hard way.
Rosalind
Claire says
This is one of my biggest pet peeves. People roll their eyes and make rude comments, whether they realize they’re rude or not when you tell them you are disabled, you’re unable to lift something, unable to “pitch in” to whatever the endeavor is. I always look for the most I can do. “I have back pain and I still work.” Hearing terms such as “workers compensation,” and even “back injury” in any capacity automatically causes a lot of people to groan and walk away or start hurling ignorant comments. When you do not have obvious outward signs of injury, no regular use of cane or crutches, and your leg brace may be covered by slacks, for instance, even some ‘friends’ may become persons you don’t want to be around if they do not want to listen, to not want to become tolerant and educated in what is really wrong with you.
Claire