Co-workers can react with resentment or understanding about adjustments that help you do your job.
by Shara Rutberg
Not long after Sarah Keitt was diagnosed with multiple sclerosis at age 30, and two months into a new job as a program manager at a small women’s health research organization, her occupational therapist and neuropsychologist suggested that working from home one or two days a week might be beneficial.
After she initially disclosed her diagnosis, her boss was helpful about making accommodations for her in the office. “But the telecommuting was a tricky one,” Keitt recalls. “The office didn’t have a policy for it, and the boss didn’t like people working from home at all.”
A former employee had abused the privilege.
Keitt explained how her therapists believed telecommuting would help with her fatigue and that working in her quiet home would offer fewer distractions than at her desk in a busy office, letting her focus more easily. At first, her boss was resistant. But Keitt persuaded her to try it for one day a week for six months. During that time, Keitt kept detailed records of her work and made certain she was available throughout the day.
At the beginning, there was “a little resentment” among her co-workers, Keitt says. In the end, however, those negative feelings—and the company’s policy on telecommuting—changed dramatically.
More than a job
Research has shown that 60 percent of people with MS are working at the time of diagnosis, says Steve Nissen, director of MS Navigator Services Delivery at the National MS Society. “But if you jump ahead several years post-diagnosis, that percentage drops to 40 to 43 percent.”
When surveyed, many people with MS said they thought they would still be able to work and would like to work, says Nissen, who has been working on disability employment issues at the Society for more than 19 years. Factors that might contribute to their departure include bad disclosure experiences as well as not knowing their legal protections or what accommodations might be possible for them.
Gradually, more people with MS are continuing to work, due to increased employer awareness of the disease, better legal protections and medical advances.
“But we still have a way to go,” Nissen says. For most people, “work is so much more than just a job. It’s a big part of identity. That’s why we do whatever we can to support people with MS in getting educated and staying employed as long as they choose.”
Being proactive is critical to helping create a positive work situation after disclosure, Nissen says. Just as each person with MS has a different experience with the disease, every job situation and every employer is different. One underlying key to making the situation positive, however, is developing and maintaining good communication between the employee and the employer, he says.
Legal rights, unique needs
Start by arming yourself with knowledge about your legal rights as well as your unique individual needs, Nissen says. Contact a MS Society MS Navigator. He or she can connect you with employment-related resources that can help you with everything from dealing with employer misperceptions about MS to understanding the Americans with Disabilities Act (ADA).
You can also contact two government entities, the U.S. Department of Labor-funded Job Accommodation Network (askjan.org) and the Employer Assistance and Resource Network on Disability Inclusion (askearn.org). Their services range from brainstorming about specific accommodations that might help you to providing information about post-disclosure legal issues.
The obligation for employers to provide reasonable accommodations for employees with disabilities is one of the key requirements of the ADA. There are no specific policies or procedures that employers must follow, however, when providing those accommodations. Accommodations can include things like special computer software, parking spots closer to the building and a flexible schedule. Find more examples of specific accommodations and a worksheet to help you analyze accommodations that may help at nationalMSsociety.org/accommodations.
When talking to your employer and co-workers about your need for accommodations, emphasize the win-win situation they create, says clinical psychologist Rosalind Kalb, PhD. The Society provides details at nationalMSsociety.org/win-win. “Talk about how that accommodation will help you be the most effective, productive employee possible,” Kalb says. She also suggests rehearsing what you’ll say with a friend or relative before approaching coworkers.
Explaining invisible symptoms
Karen Knable Jackson was working as an athletic trainer in an orthopedic practice when she was diagnosed with MS in 1996. When she could no longer work with athletes in the field, she took an administrative job at another orthopedic practice. “My employers and coworkers were beyond accommodating and helpful and understanding,” she says.
One of her accommodations was that she no longer performed hands-on patient care. Instead, she performed her job from her desk, where her employer set her up with a work station that accommodated her mobility aids (walker, scooter and, ultimately, a wheelchair) and a headset she had requested. The headset was enormously helpful. “Most people didn’t think it was a big deal, but it made me more efficient and created less stress. It may seem like a simple thing, but was huge for me, having my hands free,” she said.
Explaining “invisible” symptoms that require accommodations can be more challenging than talking about more visible symptoms like mobility issues, according to Kalb. “When no one can see what’s going on, confusion can really set in, and coworkers can resent special treatment,” she says. “People can think ‘Oh, this person is not going to be able to pull his or her weight.’ That’s when people with MS have to put on their teaching hats and explain, for example, how their MS-related fatigue is very different from other employees feeling tired at work.”
That’s what Knable Jackson did. “I used every minute I could as a teaching moment about MS,” she says. “I didn’t hold a grudge against anybody who didn’t understand the disease. If you’re going to have to deal with a disease like this, why not raise awareness? Why not educate?”
While she says the majority of her colleagues were great about her accommodations, she retired after a couple of coworkers during her last three years of work “sort of used my MS against me, making it taxing and increasing my MS fatigue.” She says that in the end, her departure has allowed her to dedicate time to her passion. She shifted from advocating for herself to advocating for all people with MS as a District Activist Leader with the Society, meeting with elected officials to discuss issues that affect people with MS.
“There are always going to be people who are unhappy about something at the workplace,” Keitt says. “Someone’s always going to be jealous. You can’t do anything about that. All you can do is to work to build trust.”
If people are unhappy with your accommodations or your position, “focus on your support network at work. Communicate what’s going on. And let the negative people learn as they see you carrying your own weight,” Kalb says.
“Disclosure always brings some risks, and we want people to go into it with their eyes wide open,” Kalb says. But sharing your diagnosis at work can also be a positive experience. “For some people, it’s been life changing to work in an environment that is welcoming and supportive,” she says. “People can be amazingly supportive and want to know what they can do to help. It makes for a tighter, warmer, mutually supportive relationship in the workplace.”
A friendlier workplace
If, after all best efforts, the situation does go badly after disclosure, it could lead to finding work with a disability-friendly employer where the employee will be happier, Nissen says. “There are companies out there making a really concerted effort to increase diversity and include people with disabilities in their company’s outreach,” he says. The Society can help connect job seekers with these companies and with related job boards.
At the end of Keitt’s six-month telecommuting trial period, she sat down with her boss to analyze the situation. They found that working from home one day a week allowed Keitt to be “a lot more productive.” They also realized that she used fewer sick days during that time than other employees.
After several years, Keitt left the organization to be a stay-at-home mother to her two children. Two years later, the organization called and asked if she could return to work, working three days a week from home. And, she learned that the company had adopted an officewide telecommuting policy. “The accommodation made because of my special circumstances was valuable to the whole organization, resulting in happier, more productive employees,” Keitt says.
Shara Rutberg is a freelance writer in Evergreen, Colorado.
Learn more about how to request work accommodations.