We hear lots of stories about how the miracles of modern medicine have helped people with chronic illnesses like multiple sclerosis (MS), rheumatoid arthritis (RA), HIV, and even cancer get back into the swing of life.
Whether we want to admit it or not, living means working. Our work often defines us. So when we turn the corner in the battle against a chronic illness, we may want the workplace to be a stop on our road to recovery.
Rosalind Joffe is the author of “Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!” and a career coach for people with chronic conditions. She has lived with colitis and other autoimmune disorders for years. She says doctors don’t always know best when they fill out perpetual time off paperwork for their patients.
“Many patients as they get weaker and sicker are told to stop working because the doctor sees work as a classic source of stress,” Joffe told Healthline. “But some work environments are toxic whether you’re healthy or not. Your doctor is not the best resource when it comes to whether you can work or not. You are, unless it’s clear work is making you sicker, which usually isn’t the case with most.”
The number of cancer survivors nationwide is ballooning, with a whopping 19 million expected to be living in the United States by 2024. A study released this week in the journal Cancer shows that many survivors experience financial distress, anxiety, and a general loss of personal control. The findings don’t surprise Joffe, who is seeing an increasing number of cancer survivors show an interest in getting back to work as quickly as possible to regain a sense of normalcy and control.
“Overall, health outcomes are better for people who continue to work, even those who do so as they age and even those who live with debilitating types of health conditions,” she said. “When we say health outcomes, we’re talking about overall well-being, such as financial status, satisfaction, and contentment.”
From occupational therapists to patient advocates, those who help patients get back on the payroll say returning to work doesn’t happen overnight, however.
A Long Road Back to the Office
Help is available for chronically ill people looking to re-enter the workforce. Karen Jacobs is an occupational therapist in Boston and a professor at Boston University. She said many people with chronic illnesses say they want to go back to work but don’t know how.
A person with a disabling chronic illness is entitled to certain accommodations in the workplace under the Americans with Disabilities Act (ADA). An occupational therapist can help the patient figure out what sort of help they need, whether it’s a specially designed workstation, more flexible hours, or some other adaptation.
It’s important to remember that the law states the person with the disability must be the one to ask for the accommodation, Jacobs stressed. They should know what they need before applying for a job or returning to work.
Jacobs said that the Job Accommodation Network’s website, askjan.org, is the first place someone looking to re-enter the work force should start. It offers both patients and doctors solutions to help people overcome their limitations and get back on the payroll.
Kevin Troutman is a Houston attorney who represents employers for the labor law firm Fisher & Phillips. He said that after reviewing their individual disability income plan, patients need to honestly ask themselves if they want to return to work.
“It starts with the person determining what they want to do and an honest evaluation of their qualifications,” he told Healthline. “Can I do this job, and if so, what does the job require and what accommodations, if any, do I need?”
Some people who are chronically ill choose not to reveal their health condition to their employer. Troutman noted that employers can only make medical inquiries during certain points during the employment process. They cannot ask medical questions until they’ve made a conditional offer of employment.
“People, frankly, are worried about being stigmatized, so it’s very personal,” Jacobs said regarding disclosure. On the bright side, she said that some employers “are really motivated to help.”
Working Because We Have To
Perhaps the most visible group of Americans riding the merry-go-round of illness followed by recovery is people with cancer. Cancer Treatment Centers of America (CTCA) acknowledges the unique issues faced by cancer survivors in the newly released journal report.
Britt Hermann, a survivorship social worker for CTCA, said their centers use techniques to help patients change their way of thinking and get over the ‘what if’ fears. They take a solutions-based approach and work with a patient to decide what comes after cancer.
If it’s employment, CTCA helps with that, too. “A patient’s medical doctor or oncologist may know what the body needs to recover from cancer treatment, but only the patient knows what they need to meet all their and their family’s needs,” Hermann said in a statement to Healthline. “The truth of the matter is that most people need to work for financial stability. Social Security Disability Insurance payments are generally modest, and many families cannot live on that income alone.”
Hermann said most employers understand when cancer patients need treatment and recovery days. The Family and Medical Leave Act allows employees to take up to 12 weeks of unpaid time off for health purposes.
Although many people are uneasy about telling their employer they are going through an adverse health event, Hermann said it’s best to be honest. She said workers should talk to the human resources department first and their immediate supervisor second when asking for health accommodations.
“If they need accommodations, such as a closer parking spot, different equipment, or a change to the work environment, more than likely these changes can be made,” she said. “If patients are not ready for full-time, they can ask to either work part-time or to see if there is another role within the company they can fill.”
Feeling Better With a New Career
Sometimes, an illness can bring about a change in a person’s career perspective.
“I worked with a patient who did not feel well enough to go back to work as a furniture store manager, so after treatment she started an online business and reached out to local newspapers and resorts and is now a travel writer. Another patient that I counseled retired as a school teacher and is now a career counselor for college students,” Hermann said.
Dr. Nicholas LaRocca is vice president of healthcare delivery and policy research for the National Multiple Sclerosis Society (the Society). He said modern treatments have made it increasingly possible for people with MS to continue to work.
“Obviously work is a very important part of people’s lives,” he told Healthline. “It’s part of your self-image and your self-esteem. To the extent where people can continue to work, it helps them to recover from some of the challenges to self-esteem you have from symptoms of MS.”
The Society has extensive resources on its website for people looking to re-enter work. LaRocca said that while some common accommodations for people with MS are relatively easy — moving a desk closer to a restroom, for example —those regarding temperature have proven more difficult. People with MS tend to prefer much cooler ambient temperatures than most because heat can make MS symptoms worse.
For those who have physical limitations caused by MS, RA, or any other condition, software and equipment can revolutionize office work.
No More Sitting Around
James Connelly lives near Seattle, Washington. He spent a decade out of work battling an HIV-related cancer that nearly took his life.
“Ten years ago I didn’t do anything but sit in my house pretty much, taking all this medicine and going through all this mental stuff,” he told Healthline. “I was ready to die a few years ago, and thought, ‘This is it.’ I really don’t know how many people get through that dark period.” He says that doing nothing led to depression and other problems.
Jacobs said the isolation that comes along with not working can take a toll on the quality of life of someone with a chronic illness.
“They want to have something meaningful in their lives,” Jacobs told Healthline. “They don’t always want the focus to be on them being sick. To stay optimistic, they need to feel like they have something to look forward to.”
For many people, wondering how to get past that huge gap in their resume is intimidating. But Erik Bowitz, who is a senior resume expert at Resume Genius, told Healthline there’s ways around that.
“Most chronically sick still lead relatively active lifestyles. Make sure to include any part-time work or volunteer work you may have done during your time unemployed,” he said.
If there is a big gap between jobs, use a functional resume format — one that emphasizes skills and knowledge over professional development. That way jobs do not need to be listed chronologically.
Now, Connelly is exhilarated, almost giddy, about going back to school to become a chef.
He’s has only been back to school for about a week and he’s very stimulated, but in a good way. “It’s really overwhelming, and there is a lot of stuff to learn. But then I realize, being around all of these people is a part of life,” he said. “Bam, it hits me. ‘I’m back in a normal lifestyle.’”