Chronic illness isn't sexy

There is nothing sexy or headline-making about chronic illness. It rarely kills a person — but it sure can curtail a life. Ted Kennedy was presented with what seemed liked larger than life issues that forced him to make quick decisions and take risks. All the more inspiring. And Kennedy, as do so many celebrities (see Patrick Swayze), continues to show us that a stiff upper lip – the thumbs up attitude will prevail and win.

But what if the story were that Kennedy is slowly losing his ability to use his legs and experiencing loss of bladder control? That he’d be able to go on working but he’d have to work shorter days and walk with a cane. Would we still get excited about his “fight”?

Living with the drudgery of chronic illness doesn’t yield quotable lines but there can be some funny stories – just ask Terri Garr who lives with multiple sclerosis.

“Another big problem is memory loss,” she’ll say with a pause. “Now, what was I talking about?” Every so often, she says, her doctor asks discreetly about sexual functions. “I don’t know,” she sighs. “I haven’t been invited to any lately.”

What’s not funny though is living with chronic illness can mean that too often you’re explaining why you “can’t” — to someone. And it’s easy for that to be read by the other person as you’re taking the easy way out — or you’re depressed and that’s the problem.

“N” is struggling with her father’s inability to accept her choices. She can’t direct musicals and teach drama to inner city children — as she did -because she’s in too much pain to be that active. FIbromyalgia just knocks her out and she needs a different career. She’s given herself a year – working very part time to pay the bills and using her savings – to create something new that will be a plan for the long run. Sounds smart, no? Not sexy, not funny but the best thing she can do.

But her father can’t understand how she can do this. He’s worried that because she’s single without anyone to support her, she’ll end up destitute. Whenever he has a chance, he asks her: When are going to get a real job again? What’s the point of working with a career coach if you don’t have a job yet?

I was in the opposite position from “N”. My parents wanted me to stop working. They believed that working made me sicker, I had two children to take care of and a husband to support me. I was on the defensive a lot about the choices I made — and given that there weren’t role models out there to point to, it was lonely!

I’ve written plenty about talking about chronic illness in the workplace — in my book Women Work and Autoimmune Disease: Keep Working, Girlfriend! and the just published Working with Chronic Illness Workbook. But this kind of talk is different.

You’d probably have a better shot at rolling the dice in Las Vegas than knowing the odds are your decisions are “right“.

How do you talk about the decisions you make – regarding work – with the people who love you but don’t understand that there’s nothing about living with chronic illness that is a quick fix?

They’re struggling just as much as you with this thing that doesn’t get better quickly. And even worse, that they can’t even see. What do you tell them?

Rosalind aka cicoach.com