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Balancing work demands and chronic illness

Millions of Americans must cope with disabilities and decide how much about their condition they should reveal to employers.

September 13, 2004|Judy Foreman | Special to The Times

Seven years ago, while hanging curtains at her home, Jackie Miller fell off a kitchen stool and injured her spinal cord. When she returned to her job, after three months of rehabilitation, she was in a wheelchair.

Her colleagues at the Education Development Center in Newton, Mass., were terrific. They moved boxes, opened doors and went for coffee. But she was determined, she recalled recently, "to prove I could do as much as before." It wasn't easy, for her or her colleagues.

"People would try to help by doing some of my tasks, and I got angry," said Miller, 56. To make matters worse, a younger woman had competently made decisions in her stead, eroding Miller's ability to resume her leadership role. After her return, she said, some colleagues seemed more comfortable doing errands for her than asking her to lunch.

Like Miller, a growing number of Americans are facing the challenge of managing a chronic medical problem at work.

Partnership for Solutions, a national policy research program funded by the Robert Wood Johnson Foundation and based at Johns Hopkins University, estimates that more than 125 million Americans live with at least one chronic health condition, and many live with more than one. By 2020, that figure is expected to grow to 157 million.

Granted, some of the things that count as chronic illnesses are minor, such as allergies. But more than 60 million Americans have more major conditions such as heart disease, hypertension, cancer, arthritis, diabetes and mental illnesses that can be both life- and work-threatening.

As much as 40% of the workforce has at least one chronic health condition, defined as a medical problem that lasts a year or longer, limits what a person can do, and requires ongoing care, said Gerard Anderson, director of Partnership for Solutions. Twenty percent have two or more such conditions. And nearly 10 million American workers are officially "disabled."

For employers, this presents an obvious problem. "These people are twice as expensive" as a healthy person, Anderson said. Indeed, three-fourths of the estimated $443.2 billion that employers will spend on healthcare in 2004 is for people with two or more chronic conditions.

The workplace can be just as trying for people with less visible health problems, such as 52-year-old Rosalind Joffe of Newton. Several years ago, Joffe was working in the Boston public schools as a mediator when her ulcerative colitis worsened and she had to have her entire colon removed.

Afterward, she was too sick to work more than part time, but her bosses wanted her full time. She quit and now runs a business coaching people with chronic illnesses on surviving in the workplace. Less visible problems can be especially tricky, she said, because if you complain or are less productive, "people think you're making it up."

One of the trickiest problems faced by workers with chronic medical conditions is how much -- and when -- to tell a boss about the problem.

Joffe counsels people to 'fess up while they're still interviewing for the job, but only if the chronic illness will get in the way. If it will, at least intermittently, they may as well disclose it early because "if the work environment will be oppositional, why do you want to work there anyway?" she said.

By disclosing, you're saying that you are a team player, she added. And if you also say that your problem is something you've successfully lived -- and worked -- with before, you help set up an attitude of trust.

Legally, employers may not discriminate against people with disabilities, which in some cases include chronic illnesses, said Stan Eichner, director of litigation at the Disability Law Center in Boston. The federal Americans with Disabilities Act requires that employers make a "reasonable accommodation" to a person's disability.

For people with a medical problem that is invisible, he continued, "there is nothing improper about deciding not to tell your employer." But if you are fired for poor performance, you can't then claim you were fired because of your disability or that your employer failed to accommodate it.

Managing a chronic medical problem at work goes most smoothly when you can reason things out with your supervisor or, if necessary, call in help from the human resources department. On the other hand, you don't have to disclose every bad moment.

Some chronic conditions get worse over time, but don't think you have to quit before you're ready, said Joffe, the employment counselor. "Don't try to predict what you don't know. People had a really bad prognosis for me, and it didn't happen."

It's especially important, she added, to "find the right fit in terms of skills, what your health is and what the organizational culture is." And to realize that working as long as possible may be as important for your mental health as for your pocketbook.

Carol Steinberg, 50, a lawyer from Brighton, Mass., who has multiple sclerosis, tries her court cases from a wheelchair. But she keeps practicing law, she said, because she gets a lot of satisfaction from helping people.

Dr. Steven J. Kingsbury, 55, a staff psychiatrist at the Veterans Administration Southern Nevada Health Care System in Las Vegas who also has multiple sclerosis and uses a wheelchair, put it this way: "Basically, people suffer less when they have something better to do."

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