Last week, my “mom” Marlene Kahan sent me a link to Lisa Belkin’s article in The New York Times: “I’m Ill, But Who Really Needs to Know?”
At first I thought it was an FYI forward; Marlene and I share many things, among them duels with our respective chronic illnesses that have deeply affected how we live and work. The article begins,
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?
So true, so true. I was diagnosed with ulcerative colitis at age 21, shortly after I was hired at Ladies’ Home Journal. It wasn’t working out. I thought I had been hired as an assistant editor; it even said so on my offer letter. I had left a job I loved, as a reporter at Adweek, a wonderful if absolutely kooky place to start a career in journalism.
But it was dawning on me that I was in fact being groomed to become a copy editor. For those of you not in the biz, copy editing is a very specific line of work requiring a highly exacting set of skills including precision and patience. Copy editing was not for me. Copy editing hated me.
As my boss realized my lack of talent and I realized the enormity of my mistake, my stress level amped up—as did my stress-related illness. That job came crashing to an end in a tearful meeting with my boss (I cried, she didn’t) in which I revealed my recent diagnosis. It was the first time she expressed any sympathy toward me. Of course, I was leaving, so it didn’t behoove me much. But I was glad to leave her with a reason for my complete incompetence other than my complete incompetence.
Since then, my illness has accompanied me like a fugly paper weight to four more workplaces. As is often the case with chronic disease, the symptoms come and go—in my case, tied undeniably to work-related stress. In 2000, it forced me into a horrific bout of steroids. In 2006, it landed me in the hospital.
How much do I tell my bosses? I tend to tell when and if I need to, which is when things get really bad, which, thank Buddha, is rare. My bosses have been incredibly supportive, considering the demanding and competitive nature of my work.
Marlene handled things differently. Just to paint a picture, she’s this model-tall, impeccably dressed, gorgeous woman. (I met her 15 years ago when I was selected for a magazine internship she ran; she soon became my mentor and my New York mom.) She holds a position of influence and importance in my industry. Her condition, too, is exacerbated by stress, which is one thing she can’t avoid in her job. She had a lot at stake. But when she was diagnosed with Parkinson’s, she decided she had to let her bosses know.
Belkin quoted her in her Times article:
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.
The point is that there’s a sort of job security in disclosure. Writes Belkin:
The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically-ill employee on the basis of that disability “if they are able to do the job with reasonable accommodation,” she said. But in many cases, “reasonable” and “able” and even “job” all become open to interpretation, said Ms. Backstrom, the author of “I’d Rather Be Working” (Amacom, 2002).
Belkin recommends employees with disabilities check out the Department of Labor’s Job Accommodation Network. This page explains who is protected by the Americans With Disabilities Act and what “reasonable accommodation” means, among other things.
I don’t think there’s one right way to deal with disclosing illness at work. You do what works for you and for your workplace. Some bosses are motivated to keep and accommodate you, valuing your contribution above the inconvenience. Other employers can’t be bothered. We workers have some rights, but it’s important to know that they’re not absolute. Disclosing illness at work is still a risk.
…but maybe one worth taking. Shortly after she was diagnosed, Marlene began raising money and awareness for her cause. She’s raised $145,000 in three years for the Parkinson’s Unity Walk, an annual fundraiser in New York City. She got friends in the magazine biz to run public-service ads raising awareness. She inspired a friend to design a bracelet, part of whose proceeds will go toward her cause.
Marlene once told me that we can’t help what hand we’re dealt, but we can control how we play it. (She’s not a gambler; I’m not sure why I remember her using that analogy.) By using her professional ties and acumen to do something, not just for herself but for all her fellow patients, she’s willing her hand into a flush.