Multiple sclerosis (MS) is a baffling disease. The symptoms may wax and wane unpredictably, and the degree of disability may worsen with time. Living under this cloud of uncertainty can be stressful. So it's no surprise that MS often takes an emotional toll, not only on the person with the disease, but also on family and friends.
Yet, as with any other big challenge, a lot depends on how you handle it. "Every day, I see people with MS who are boldly moving forward with their lives," says Karen Blitz-Shabbir, D.O., director of the North Shore-LIJ Health System MS Care Center in East Meadow, N.Y. "They've chosen to inform and empower themselves."
If you have MS, you can make the same choice, regardless of how your disease unfolds.
Prepare for the Unexpected
When you have MS, you can be doing well one day. Then the next day, you wake up to an attack. Suddenly you're struggling with any of a wide variety of possible symptoms, such as vision changes, weakness, balance problems, numbness, muscle spasms, or fatigue.
These erratic symptoms affect your ability to function at home and work. And that, in turn, affects everyone around you, from your partner to your coworkers.
Not knowing what tomorrow might bring can make you feel helpless. To counter that feeling, it's crucial to take steps to restore your sense of control.
"Number one, educate yourself. And number two, take treatment," says Dr. Blitz-Shabbir. "We have medications that can change the course of the disease. And we have many ways to effectively manage most, if not all, of the symptoms."
To minimize the impact on others, have a backup plan ready for days when you aren't feeling your best. If you occasionally need someone to help out with tasks such as watching the kids or running errands, develop a list of people you can ask on short notice.
Deciding how much to disclose about MS at work is a personal choice. On one hand, talking openly about your condition makes it easier to find solutions when problems arise. It may also be a relief not having to keep a secret from your boss and coworkers. On the other hand, some people at work may treat you differently after they find out about your disease. Fair or not, your career could suffer.
Realistically, it may not always be in your best interest to discuss your MS. But if you decide to ask for a job accommodation or medical leave, you'll need to provide your employer with enough information to support your request.
Fight the Fatigue
MS can be exhausting, both physically and emotionally. Many people with MS experience constant tiredness that doesn't go away even after a good night's sleep. Depression—another common symptom of MS—only makes the fatigue worse.
In some cases, fatigue may be reduced by taking medications such as antidepressants, amantadine (Symmetrel), or methylphenidate (Ritalin). Pacing your activity and avoiding excessive heat may help as well.
In addition, "using assistive devices can help conserve your energy," says Marijean Buhse, Ph.D., NP-C, a nurse practitioner who works alongside Dr. Blitz-Shabbir and teaches at Stony Brook University.
Because fatigue isn't visible, it can be a difficult symptom for others to understand. "You may be unable to perform your usual activities because you're so tired. Yet you look perfectly fine," says Buhse. "That can cause big problems in relationships."
Some people might even suspect that you're making excuses to duck responsibilities. To prevent such misunderstandings, it's important for those around you to be well informed about MS. Buhse suggests bringing your partner along for some doctor visits, so that he or she has a chance to ask questions, too.
Address the Stress
There's no doubt that MS can be quite stressful. Along with physical and emotional challenges, it may bring financial strain and job concerns. Yet you don't have to let stress get the upper hand. Dr. Blitz-Shabbir says, "All of us, whether we have MS or not, need to know some strategies for relieving stress."
Relaxation techniques—such as taking several deep breaths, practicing yoga or tai chi, or meditating—can help. So can paring down an overbooked schedule and penciling in some fun activities and enjoyable exercise. In addition, you'll benefit from connecting with others and perhaps joining a support group. If you have money worries, financial counseling may help ease your mind as well.
Ultimately it comes down to taking charge of your life. You can't control having MS. But you can control how well you deal with it.
The erratic symptoms of MS can take an emotional toll on you and your family and friends.
It helps to have a backup plan ready for days when you aren't feeling your best.
Deciding how much to disclose about MS at work is a personal choice.
Focus on finding ways to combat fatigue and manage stress.