I’m Ill, but Who Really Needs to Know?

[groovedaddy]

ONE of the first decisions you make in the emotional hours after a scary diagnosis is whether to tell others. Most of us share the news with our loved ones, but what of the circles beyond, particularly those at work? Your boss?

At first, Richard M. Cohen, whose multiple sclerosis was diagnosed at 25, did not tell. Mr. Cohen — whose latest book, “Strong at the Broken Places,” recounts the stories of five patients with chronic illnesses — was starting what would become a hard-charging career as a television news producer when he learned of his condition. He feared he would be considered unfit. He kept his secret for years despite failing vision and shaky balance.

Marlene Kahan, in turn, disclosed her condition right away. Four years ago, when she learned she had Parkinson’s disease, she had been the executive director of the American Society of Magazine Editors for more than a decade. With that longevity came security, she hoped.

Ms. Kahan was also afraid that the mix of symptoms and side effects from the treatments would leave her at “less than 100 percent,” she said, making it seem as if she was either slacking or even sicker than she was. “I didn’t want people to wonder and jump to other conclusions,” she said.

http://www.nytimes.com/2008/02/21/fashion/21WORK.html?th&emc=th

[Warpy]

1. I told people what was going on

but I certainly never dwelt on it. I wanted them to know I was moving more slowly or that my balance was bad because I was having a flare, not because I'd shown up for work drunk or drugged. They needed to know that if I barfed and looked a little grey around the edges, it was side effects from nasty drugs, not a hangover. Telling them was self preservation.

It also kept me from being hired on staff and getting benefits. I'd likely have been fired over inaccurate assumptions if I hadn't told long before any insurance kicked in, so it was a wash in that department.

The miracle was that I lasted 25 years as a nurse before I finally had to realize I was sicker than most of the patients, and I was working in specialty units that took care of the sickest.

It's up to the individual whether or when to disclose a serious illness to bosses and coworkers. We all pretty much know what we're facing in terms of judgment, risk to our employment, and whether or not we'll get benefits. I certainly can't blame anyone for not disclosing this stuff, especially with the world's worst health care system in place.