How to handle workplace issues when you have multiple sclerosis.
Elissa Levy, a 37-year-old with secondary progressive multiple sclerosis (MS), is living proof of the unpredictability of this progressive neurological disease that affects the central nervous system.
Soon after being diagnosed in January 2002, her physical status plummeted quickly. The former fitness buff who regularly skied and jogged describes the overwhelming MS-induced fatigue that plagued her almost daily. "Sometimes my eyes hurt too much to watch TV," Levy tells WebMD.
During that period, she traded her running shoes for a cane, broke off a relationship with someone she had once considered marrying, and relinquished a long-sought full-time position as director of a new charter school, taking up part-time work instead.
Then, just as quickly as the symptoms struck, they abated. "I had tried all the drugs on the market for MS. As a last resort, I even did chemotherapy." She found relief through an experimental drug (not yet approved by the FDA for MS).
Now, for the second time in three years, she's had to evaluate her future. "I still dream about going for a jog. But now I can walk home from a movie 20 blocks, instead of taking a cab," Levy says. She is back to work full time, sometimes pulling 12-hour days. And she's re-established a relationship with her old boyfriend.
Through the ups and downs of the disease, people with MS must go on with their lives. Very often, that means making long-range decisions about how to live, from employment to recreation -- and being open to re-evaluating them as needed. In addition to these "big picture" decisions, practicing seemingly small lifestyle strategies can make the disease more manageable.
Working With MS
Like many others with MS, Levy was forced to make decisions about her professional life. Among the questions she faced: Do I tell my employer and, if so, when? Can I continue working? What accommodations will I need?
New laws, ever-increasing resources, and improved attitudes are making these decisions easier. Currently, 43% of adults who have had MS for 12 years retain employment, according to an ongoing nationwide study sponsored by the National Multiple Sclerosis Society (NMSS).
But some experts believe that percentage could be higher. "Employers may have preconceived ideas about what a person with disabilities can do. It takes time to change attitudinal barriers. There's still work to be done," says Steve Nissen, director of employment programs at the NMSS.
That's why, for now, it's generally up to the employee with MS to initiate any discussions involving disclosure or accommodation requests in the workplace.
Nissen considers disclosure -- the whens, whos, and hows of it -- one of the most difficult aspects of working with MS, or any disability.
Before disclosing, Nissen suggests the following: "Ask yourself: 'What's going on to make you think it's time to disclose? Are you having new or different symptoms that's posing a challenge at work? Are you having trouble meeting deadlines, or missing time?'"
How to Tell Your Boss
Often, disclosure accompanies a request for special workplace accommodations. The approach can sway the outcome, Nissen notes. "It's more than saying 'This is what I need from you.' It's 'Here's how I can be more productive, effective, and reliable,'" Nissen tells WebMD.
In the best-case scenario, such discussions with an employer begin as open, two-way dialogues. "It really needs to be an interactive process. You can't just go in there, make your demands, and walk out," Nissen says.
"When it comes to accommodations, there are so many different possibilities based on symptoms and job duties," Nissen tells WebMD. An accommodation may mean an altered work schedule with shortened hours or telecommuting on an as-needed basis when fatigue becomes overwhelming. It may mean adaptive equipment that allows an employee to talk into a computer rather than tap on a keyboard. It might mean keeping one room at a lower temperature than the rest of the office, if heat sensitivity is an issue.
"These types of accommodations seem basic but they can really make a difference," Nissen says. Some cost more than others. To find out what's available, Nissen recommends that employees start researching locally, beginning with an area NMSS chapter and incorporating other resources such as one's state office of vocational rehabilitation.
Alternatives to Work
Choosing not to work full time anymore doesn't have to mean an end to productivity. "There are still ways to contribute as an active member of society," Nissen notes. Levy serves as a prime example. Having cut back to part-time work while battling daily pain and fatigue, she continued to find meaning through volunteer work.
"I stayed positive," says Levy who, almost immediately after being diagnosed, got involved in fundraising for the disease. "That's where I found my support group -- among other fundraisers," Levy tells WebMD.
Clearly, how people with MS cope makes a difference in their day-to-day existence.
"Those who have the hardest time are those who see it as a war to win. That's a setup for feelings of failure, guilt, and inadequacy when and if they can't beat it," says clinical psychologist Rosalind Kalb, PhD, director of the NMMS Professional Resource Center.
"Those most successful are those who say 'I can't win the war, but let's look at which aspects I can conquer,'" Kalb tells WebMD. To this end, Kalb urges patients to break the disease down into individual challenges, whether fatigue or spasticity. "This way, they feel like they're managing the disease rather than vice versa," she says.
Lifestyle choices can also make an impact on one's ability to manage MS.
Impact of Exercise
Exercise is one such choice. "Many years ago they used to say 'Don't exercise, it will make you too tired.' Now, we're encouraging patients to stay as active as possible," says Sheila Schaffer, a physical therapist at Kernan Orthopaedics and Rehabilitation Hospital in Baltimore.
New research results promote physical activity. One study found that exercise improved fitness and function in people with mild MS and helped maintain function for those with moderate or severe MS. Investigators found aerobic exercise that incorporated balance training to be the most effective type. In yet another study, an eight-week progressive resistance-training program improved walking and overall functional ability in people with moderate MS.
Researchers have begun to evaluate the role of diet and certain antioxidants in relation to MS. "There's a need for a well-balanced diet. I also recommend that patients take a multivitamin," says Walter Royal III, MD, associate professor of neurology at the University of Maryland School of Medicine. Other experts stress the importance of a fiber-rich diet.
Royal and other researchers are exploring the potential role of vitamins D and A in the clinical course of the disease. For now, he does not recommend specific supplementation. "It can be quite hazardous to take excessive amounts of either vitamin," Royal tells WebMD.
For anyone with MS who needs a good reason to relax, here's one. Studies have linked stress to worsening MS symptoms. In one study, investigators recorded subjects' stressful life events unrelated to MS, like financial problems or death of a loved one. Stress caused by these events doubled the risk of an MS exacerbation.
Relaxation techniques have worked for Levy. Besides taking her medicine regularly, Levy claims that meditation has made the biggest difference in her life. "My meditation helps the most. It keeps me focused on the present and allows me to stay centered," Levy tells WebMD.
"That said, you can't stop thinking about the future altogether," she adds.