Tuesday, July 22, 2008

The Disclosure Question

My doctor is great about putting patients in touch who she thinks may be helpful to each other. So the other day I got a call from a young, early stage woman named Lauren, and we ended up discussing whether, when, and how to tell people that you have Parkinson's.

It is not a comfortable or easy decision. Editor Michael Kinsley stayed in the closet for years, as did Michael J. Fox, and not without reason. Disability is viewed by many as deficiency, and a premium is placed upon presenting a can-do, up-and-at-‘em, high energy image. So what’s best? Try to squeak by on the right combination and timing of meds and fly under the radar? Or be out and proud?

Most HR people I have talked to will advise you that if you are interviewing for a job, it is best, if possible, to keep your condition to yourself. You are not required to disclose it and your prospective employer is expressly prohibited by the Americans with Disabilities Act (ADA) from asking about it. When there is a lot on the line—like health benefits—and you can “pass,” it is probably in your interest to save disclosure for after you’re hired. On the other hand, if your interviewer suspects that something is wrong but doesn’t know what it is, that could be the kiss of death.

If you're in a job when you are diagnosed, you have protections under the ADA. Yet many employees are reluctant to disclose, fearing that colleagues will doubt their abilities and lose sight of their individuality, seeing only the disease. And, legislation notwithstanding, bosses may exert pressure, subtle or overt, to quit.

Sooner or later, with this disease, we all reach the point where the question of passing is moot. Anyone who meets us will get that something is going on. We can no longer control that. We can, however, choose what information to share as well as how to share it. For everyone, those choices will be different.

Here is what I have chosen. I do consulting work, and I often find myself at a meeting or workshop with a group of people I’m meeting for the first time. What I don’t want is to feel self-conscious and scrutinized. Are people looking at me and thinking that something is wrong with me? Is my tremor kicking up? Do I look weird? All of these questions produce anxiety, which in turn guarantees a flare-up of the symptoms I am trying so hard to suppress. So I make a pre-emptive strike at the outset, along these lines:

Something I want you to know about me: I have Parkinson's. So if you notice my hand or my leg shaking, that’s what’s going on. It is not that I am overcaffeinated, though I always welcome a jolt of caffeine.

This little speech, even with the lame caffeine joke, makes people visibly relax. I get smiles coming back at me, and almost invariably someone tells me at break or at the end of the day about someone in their life with Parkinson's. Most important, I can relax and get on with the day.

So that’s what works for me. You?

3 comments:

Anonymous said...

I often tell people during an initial visit that my temor is beneficial because it helps me brush my teeth

Sue in So California said...

After three straight Friday night's out with our friends, at others' homes, with me knocking over and breaking a wine glass early at each, I decided I'd better explain! Haven't broken a wine glass since!

Anonymous said...

What do you know about PD? You may have a “one size fits all” concept. Find out about Parkinson’s from those who have it. My beloved relative says that she sees her PD fellows everywhere and the numbers are staggering. The “tells” used to hide are obvious to her.

Why don’t all of us see? Maybe if this disease is ever important in the eyes of all, we will.

Reading Matter

  • David Howes, editor. Empire of the Senses: The Sensual Culture Reader. NY: Berg, 2005.