The majority of people with Multiple Sclerosis (MS) retain the ability to work full-time or part-time years after the initial diagnosis. However, some leave their jobs because doctors or friends encourage them to quit work and apply for disability benefits. Others stop working because they fear symptoms will affect their work performance.

According to Phillip Rumrill, PhD, associate professor in rehabilitation counseling at Kent State University in Ohio, "The high drop-out rate from the work force is not fully explained by the severity of the symptoms."

The fact is that MS is unpredictable and periods of remission can be a big part of the disease. "If you quit, it is that much harder to get a new job," warns Beverly Noyes, PhD, manager of Health and Independence at the MS Society Chapter in Denver, CO.

Experts say developing specific coping mechanisms and strategies can make a big difference. Many people with MS can continue working by taking medication to control the disease and its symptoms, requesting modifications to their work situation, and effectively communicating about their disease.

Pacing is key
Acording to Dr. Rumrill, fatigue is a major source of disability at work, but it is manageable. Identify what is draining your energy. If it's rush hour traffic, start and end your workday earlier. "I make sure I get enough sleep, eat well, and take medication to control flare-ups," says Lisa Peck. "If I don’t sleep well the night before, I may come to work late or take naps."

Stress often causes people to quit work. Just as she’s shifted her mountain biking, her favorite pastime, to different times of the day to prevent becoming overheated, Lisa avoids overtaxing her emotional circuits. "I know that flare-ups occur when I’m stressed. I’m honest with myself about what I can and cannot do. I remember that I work to live - not the other way around."

When to tell
Legally, you are not required to disclose your MS to an employer. Disclosure can be risky, say experts. Employers may make negative assumptions about your abilities, take away responsibilities, or withhold promotions. Dr. Noyes advises, "If your symptoms are invisible and you don’t need to disclose your illness, don't. If symptoms are visible, an explanation can help squelch misinterpretation.

Guidelines for disclosure
Seek advice. A phone consultant at your local MS society chapter can help you determine the best approach.
Disclose only if you need accommodations to be more productive.
Be brief, positive, nonapologetic, and focus on your employer's need to know you can do the job.
Stick to symptoms that may affect your work. Lisa told her secretary: "I sometimes have trouble with my short-term memory, and I will need reminders about schedules."

Asking for accommodations
You have a right under the Americans with Disabilities Act (ADA) to reasonable accommodations to enable you to continue doing your job - provided you’re capable of performing the job's essential functions. But it’s up to you to come up with solutions. Reasonable accommodations are determined by the employer and may include flextime, special equipment, and space modification. Keep in mind the following when you approach your employer:

Do research regarding accommodations. What will they and/or equipment cost? Are they easy to implement? Are they readily available?
Put it in writing. Propose only work-related solutions geared toward productivity. For instance, to combat fatigue, suggest a 2-hour nap at lunch and an extra hour of work at the end of the day.
Be prepared to compromise. You may want a voice activated computer for a vision problem. The compromise may be software that enlarges the text.
Use the law as a last resort. If your employer won't cooperate, you may file a legal complaint with the Equal Employment Opportunity Commission (EEOC). Before entering an adversarial situation, contact the ADA Information Line at (800) 514-0301.

What can I do?

Multiple sclerosis is a disease that has to be lived with on a daily basis and for the rest of your life. If you have little or no physical disability, your lifestyle and that of your family may not change at all. Nevertheless, the knowledge of the disease and its potential implications can weigh very heavily on the individual with the disease and the surrounding family. It all really depends upon the symptoms you are experiencing and how you feel. Symptoms can be continually present or pronounced at different times. The severity of the symptoms often dictate to what extent MS will affect your life.

Many people with MS say they have to plan ahead more than they were used to doing in the past and that they have to change some of their activities and schedules. If fatigue is a problem, for example, several short rest periods each day may allow you to continue your usual routine, but at a slightly slower pace.

Exercise

Physiotherapy and regular exercise can be helpful in keeping as fit as possible. You and your doctor will probably want to discuss what therapy or exercise programme would be of benefit. It might involve having physiotherapy on a fairly regular basis or doing specific exercises at home. Others have found activities such as swimming, yoga and horseback riding to be helpful. Any exercise that you enjoy and are able to do comfortably will be beneficial. Besides maintaining good muscle tone, exercise can be a great way to release tension and to relax. You local or national MS society may offer recreation or exercise programmes that would be helpful, or recommend facilities or health personnel to provide these activities.

Diet

Over the years, a number of diets for MS have been proposed, which is probably only natural for a disease with no known cause or cure. Whilst some of the suggested diets contradict each other, it doese make sense to have a nutritionally balanced diet that will ensure you have all the required vitamins and minerals. Some peple find that a diet low in animal fats and high in polyunsaturated fats is helpful to them. Please see the section on Alternative Therapies Used by People with MS from "MS The Guide to Treatment and Management" as well. It would be wise to discuss any changes in your own diet with your physician or dietician.

Job Planning

Because MS might bring about some physical and cognitive disability over time, it makes sense to realistically evaluate your current job in the light of these possible changes. If your job is very physically demanding, you might want to consider alternative jobs or retraining to reduce the physical nature of your occupation. In a more sedentary job, your physical limitations may not impact so greatly and you might be able to remain at work for many more years. Career counselling and vocational training may be available in your country.

Family Changes

One of the more difficult problems for the married couple to cope with after a diagnosis of MS is the possible change in their roles. The possibilities for the future should be looked at together. A family with two incomes may have to learn to cope on one. One of the partners may have to take on additional responsibilities for running the home and caring for the children. Full and open discussions are the key to dealing with these important changes successfully.