Bearing No Ill Will

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Help provided by co-workers isn't always formalized. In 1993 Joan Frier, now a public relations manager for SHARE, a national breast- and ovarian-cancer advocacy group based in New York City, started a new job as a legal text editor while recovering from breast cancer. Her bosses sometimes had unrealistic expectations, and it was her co-workers who gave her day-to-day encouragement. "They would take on some tasks for me, cover for my mistakes and help me with new things," she recalls. "I couldn't have done it without these people."

Frier was fortunate that public knowledge of her health condition caused people to rally for her. Disclosure of health status to employers and colleagues is often the source of one of the most daunting fears chronically ill people face. Dawn Quick, 39, of Fort Lauderdale, Fla., was found to have hepatitis C in 1996. Devastated, she nonetheless continued to work as a legal assistant in a prominent law firm. But she shared the news of her condition--in confidence, she thought--with her supervisor. In no time, people began to express condolences. "It was awful-- people coming up to me in the elevators, tapping me on the shoulder while I was at my desk," says the mother of two. Worse by far, Quick was told her position was being dissolved, and she was given three months' notice of termination. The news was heartbreaking. "I loved my work," she says. "I had a great track record and was constantly promoted. I found out I was sick and lost my job." Though the firm denied she was fired because of her health, Quick sued on the ground of discrimination and settled out of court.

Even so, experts insist communication is vital, and say people can't always make proper use of their rights unless employers know how best to accommodate them. Says attorney Susan Slavin of Jericho, N.Y., who represents chronically ill individuals: "Once you open that dialogue, you're protected. You can't advocate for yourself if someone doesn't know your condition."

Advocates agree there is an urgent need for education in the workplace concerning chronic illness. Some of the most difficult situations arise for people with HIV/AIDS, which still carries a stigma in many places. Most of the time, the needs of those with the disease are small but critical to their health. "Many of the drugs must be taken with food, and so the person needs to be eating at all times of the day, not just at lunch. Co-workers may see this and ask questions. So that person is presented with a disclosure issue when he or she hasn't asked for it," says Howard Schwartz, managed-care coordinator at the Gay Men's Health Crisis in New York City. Says gmhc's attorney, Debra Wolf: "I have scores of discrimination cases. Most are situations where individuals are slowly forced out of their jobs."

Both employees and their employers need to know what the law says. gmhc gives its new employees a seminar on the Americans with Disabilities Act and the Family and Medical Leave Act. The forum helps people understand the intricacies of the law and informs them in advance, rather than in the thick of a crisis situation. "Remember what work represents to people," says Sloan-Kettering's Zampini. "It's mastery and control over one's life. Work brings an enormous sense of personal fulfillment and self-worth." And productive workers--even those with chronic illnesses--more often than not give back with interest.