Managing chronic health conditions on the job
An increasing number of Americans with medical issues survive -- and thrive -- at work.
By Judy Foreman, Globe Correspondent, 8/29/04
Seven years ago, Jackie Miller, now 56, fell off a kitchen stool and injured her spinal cord while hanging curtains at her Cambridge home. After three months of rehabilitation, she went back to her job as a senior scientist at the Education Development Center in Newton -- in a wheelchair.
Her colleagues were terrific. They moved boxes, opened doors, and went for coffee. She was determined, she recalled recently, ''to prove I could do as much as before.'' But it wasn't easy, for her or her colleagues.
''People would try to help, by doing some of my tasks, and I got angry,'' she said. While she was in rehab, a younger woman quite competently made decisions in her stead, which in subtle ways made it tough for Miller 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, an increasing number of Americans are facing the challenge of managing a chronic medical problem at work. According to Partnership for Solutions, a national policy research program funded by the Robert Wood Johnson Foundation and based at Johns Hopkins University, more than 125 million Americans now 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.
Among the factors fueling that increase are the aging of the baby boomers and medical advances that have increased life spans.
Granted, some of the things that count as chronic illnesses are minor. But more than 60 million Americans have conditions such as heart disease, hypertension, cancer, arthritis, diabetes, and mental illnesses that can be both life- and work-threatening.
As much as 40 percent of the US 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 the 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-quarters of the estimated $443.2 billion that employers will spend on healthcare in 2004 goes for people with two or more chronic conditions.
The working sick can also result in ''presenteeism,'' meaning that a person goes to work ''but feels so miserable he doesn't get anything done,'' added Helen Darling, president of the National Business Group on Health in Washington, D.C. Absenteeism, lost productivity, and related health claims for chronic conditions cost employers $500 billion per year.
For those with less-visible health problems, like 52-year-old Rosalind Joffe of Newton, the workplace can be just as trying. 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 how to survive 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 your chronic illness really will get in the way. If it will, at least intermittently, you might 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 are prohibited from discriminating against people with disabilities, which in some cases includes chronic illnesses, said Stan Eichner, director of litigation at the Disability Law Center in Boston. The federal Americans with Disabilities Act also says that employers must 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 the potential problem is that 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 a human resources department. On the other hand, you don't have to disclose every bad moment, or get ahead of yourself.
Some chronic conditions do 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, a 50-year-old lawyer from Brighton who has multiple sclerosis, now tries her court cases from a wheelchair. But she keeps practicing law, she said, because she gets a lot of satisfaction out of helping other people.
Dr. Steven J. Kingsbury, 55, a staff psychiatrist at the Veterans Administration Southern Nevada Health Care System in Las Vegas -- who also has MS and uses a wheelchair -- put it this way: ''Basically, people suffer less when they have something better to do.''
Judy Foreman is a freelance columnist who can be contacted at .