Working Through A Chronic Illness

One of the largest and scariest questions that I have had through my experience with Lyme Disease was how to handle the change at work. I'm still struggling and learning how to deal with it as well as my poor boss who depends on me being there.

I did find a good start to my research on how to manage this challenge professionally.

By Eve Tahmincioglu
msnbc.com contributor
updated 7:38 a.m. ET, Mon., Nov . 19, 2007

Rick Williams, a firefighter from Silverton, Ore., was having so much pain in his fingers that he sometimes couldn’t turn the nozzle on the fire hose, often asking coworkers to take over.

He would be discreet, not letting anyone know he couldn’t handle the job. “I would just tell them, I wanted to hold the hose and back them up,” he says. “I never stopped doing my job.”

No one suspected that Williams was actually in agony, with joint pain that made even pushing the button on a car door impossible. He was popping Ibuprofen pills as if they were candy, in denial over what he was feeling.

Finally, Williams went to a doctor in 2001 after waking up one morning on a training trip in Salt Lake City and finding he couldn’t close either of his hands.

He was diagnosed with rheumatoid arthritis, a chronic illness that causes severe pain and joint-motion loss.

“I’ve been a firefighter since the mid 70s and there I was, 43, diagnosed with an auto immune disease where basically my body is attacking itself,” he says. “I was fearful for my job.”

After trying many different drugs to help with his arthritis, he found one that did the trick, and is now able to not only function in his job but is typically pain free.

At age 49, Williams is still a firefighter and plans on being just that until 2011 when he gets to retire. “My employer knows I have this but they’re okay with it mainly because I’m doing my job,” he adds.

There are 130 million people who have one or more chronic conditions in the United States today, according to Gerard Anderson, professor of Health Policy and Management at Johns Hopkins Bloomberg School of Public Health.

There are few solid numbers on how many of workers like Williams, are staying on the job even though they suffer an ongoing illness, including arthritis, diabetes, multiple sclerosis, asthma, cardiac and cardio-vascular diseases, and even cancer. But experts believe the numbers of individuals with such diseases in the workplace is increasing.

The aging population and the rise in the nation’s obesity rate are contributing to the growth in the numbers of individuals with chronic illnesses. But what are also driving the increase, experts say, are therapeutic advancements such as drugs and rehabilitation programs for a host of chronic diseases.

As much as three-quarters of the population with a chronic illness can be helped through disease management and continue to work, says Chris Wilhide, the director of program development and research for Nationwide Better Health, a division of insurance giant Nationwide that provides disease management programs to employers.

As a result, employees today are living and working with a host of chronic diseases that may have once meant a quick trip to the unemployment line.

“All these factors are allowing people to live more productive lives,” says Rosalind Joffe, a career coach who focuses on people with chronic illness, and the author of the forthcoming book “Keep Working, Girlfriend! Women, work and chronic illness.”

Joffe’s overriding message: “Figure out a way to keep working.”

While advances have made it easier for workers to keep working, it’s not a simple task to go from realizing you have a chronic condition to being able to continue your career ambitions.

Joffe, who has multiple sclerosis, had to make adjustments in her career. She was a video producer but found she often had trouble walking and suffered from intense fatigue. She ended up going to the accounting side of the business, and then went on to teach. Eventually she started her own consulting firm so she could work from home. “You have to figure out how to work in an environment that’s accepting and conducive to what you’re dealing with. That should be your first priority.”

There are a host of issues to consider, including everything from how to tell your boss to how to deal with those days, or weeks, you might not be up to snuff because of your illness.

As far as telling your boss, Joffe recommends only bringing it up if your condition is getting in the way of your work, and even then keeping your personal trials and tribulations to a minimum.

“If it’s changing the way you work it’s foolish not to talk about it, otherwise people will make assumptions about you that are much worse than if you told them you have a chronic illness,” she notes.

Let your boss know you can handle the job, but that you might need time to take medication or go to doctors’ appointments. And bring some coworkers into the fold because they may be able to help out on projects if you miss work. You can then offer to reciprocate.

Ask your employer if they could make reasonable accommodations to your workspace or the way you do your job, but make it more of a give and take. Don’t make demands.

If your boss is unreasonable, you may have the law on your side depending on your condition. The Americans with Disabilities Act covers individuals whose illnesses have made them disabled in certain life functions, either permanently or intermittently, explains Chris Kuczynski of the Equal Employment Opportunity Commission. You can find out how to file a claim at the agency's Web site.

On a day-to-day basis, there are things people with chronic conditions can do to make their work life a bit easier.

Take a break from the computer. I know you’ve heard this before. But taking breaks from the computer and changing your posture is even more critical for people who have chronic ailments, says Lynn Gerber is the director of George Mason University's Center for Study of Chronic Illness and Disability.

And getting enough sleep, eating right and exercising, Gerber adds, are key. “If you have a high [body mass index], above 30, that means metabolic consequences,” she explains.

One of the toughest questions that a person with a chronic condition may someday have to ask is, “how do I know when the job is just too much for me?”

Maybe accommodations have been made at work to help you adapt, and you’re taking all the right medications and used all the right pain management techniques, but you’re still in too much pain, too tired or too depressed to handle the daily grind.

Gerber suggests talking to a licensed disability evaluator. They are typically in an outpatient setting and have a background in rehabilitation or neurology, and can help you assess if you need to change something in your disease management regime or you just physically can’t handle the workload.

It might just be the stress of your job that’s making your condition worse.

Kim Bregman was diagnosed with Systemic Lupus Erythematosus two decades ago, and at the time she was a manager at IBM on the executive fast track.

“The best change I made to my life was leaving Corporate America and moving into jobs where I had complete autonomy of my job and work demands. I got off the fast track and learned to stay busy, involved and successful on my own terms,” says Bregman, who started an Internet publishing firm and is now a real estate agent.

“There is no reason to be super woman,” she says, adding, “You are a better person for forgiving yourself for having the disease and loving yourself enough to take care of yourself first.”