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Multiple Sclerosis and Your Emotions
by Mary Eve Sanford, PhD, and Jack H. Petajan, MD


What can we say about the emotional makeup of people who have MS? How do most people react? Dr. Nicholas LaRocca, an MS researcher, arrived at these conclusions after reviewing major studies:

  • No MS personality profile has ever been demonstrated.
  • People with MS are as normal psychologically and as diverse as any other random group. They can be expected to be distressed when diagnosed, and to be under additional stress when they experience attacks of symptoms or losses of ability.
  • Emotions such as depression, grief, and anxiety often fluctuate with the ups and downs of the illness.
  • An individual’s sense of self-esteem may be seriously challenged by MS, but most people bounce back and maintain a positive sense of self-worth over the long term, even when their MS symptoms worsen.
  • Most people find information about MS helpful and would prefer to understand as much as possible about the disease.
  • There are many factors beyond the physical symptoms involved in adjusting to MS.

In short, while we can mention common disturbing emotions and common problems, no two people with MS have exactly the same psychological profile.


What does it take to be reasonably happy with a chronic illness? There are a number of common misunderstandings about this. A landmark study by the researchers Sobel and Worden in 1982 identified common misconceptions among a group of cancer patients that tend to make successful living almost impossible.

The ideas included feeling that one should be completely free of symptoms; people should treat you just as they did before you became ill; you should be able to do everything you did before you became ill; your family shouldn’t be inconvenienced or made to worry about your condition; and your doctor always knows best.

Most of these will be rare for anyone with a chronic illness. Moreover, none of them are automatic obstacles to happiness or achievement.

Research has identified a number of characteristics common to people who live successfully with chronic illness:

  • They are actively involved in their own care, as well as in other aspects of their lives.
  • They are flexible, resourceful, optimistic, and positive.
  • They have a practical approach to problem-solving.

It is interesting to note that these people maintain positive attitudes despite physical and cognitive symptoms, prejudicial treatment by others, limited activity, family problems, and doctors who don’t have all the answers.

Here are some points that contribute to successful living with MS:

  • Stay involved
    People with many different chronic illnesses have demonstrated that when they are actively involved in the world around them—especially in their own health care—their outlook improves. Joining a support group often provides emotional connections. Seeking good information and learning about MS treatment may be especially helpful.
  • Appraise your MS with realism and flexibility
    Some people stubbornly try to do all the things they always did regardless of their symptoms. A realistic approach means discarding some activities and taking on new ones that are more feasible—and thus more enjoyable and rewarding.
  • Maintain strong bonds with family and friends
    This is an important ingredient in a good life whether one has MS or not. Most of us need to know we are loved and cared for. We also need to love and care for others who are important to us. The limitations of MS may change how this is done but not the need.

The person with MS is not the only person in the family and circle of friends who must adjust to a changed situation. Each person adjusts at different rates and in different ways, and the process cannot be forced. Nevertheless, relationships have the best chance to remain strong if everyone relaxes and engages in open conversation.

The person with MS needs to take the initiative in opening up discussions. By taking the lead and bringing up MS and what it does, the person with MS reassures friends and relatives and puts them at ease.

Talk sessions to air feelings will often reveal anger, frustration, and fear, as well as the positive emotions of love, concern, and the desire to provide support. These negative reactions shouldn’t be discouraged. They can be handled appropriately. It’s often true that someone who is overly cheerful is actually suppressing fears and worry—and possibly anger and resentment.

  • Keep a sense of purpose by setting goals
    Having a goal—however modest—provides something to work toward and puts some structure into life. A large study showed that many people with MS coped better when they carried on their daily activities with a real sense of movement toward a goal.
  • Talk about your concerns and feelings
    It’s important for people with MS to have at least one trusted individual to talk with about what MS is doing to their lives. If this would be a burden to relatives or friends, then a counselor, a spiritual advisor, or another person with MS may become that valuable confidant. The National MS Society chapter, a doctor, nurse, social worker, or other professional may provide referrals. Most people find that talking with someone from time to time lets off steam and helps them develop perspective.

Most people also talk to themselves and this affects their feelings. A shift in “self talk” from “This situation is impossible” to “I think I can handle this” is a major step toward a healthier life.

  • Find an exercise regimen that’s right for you
    Exercise is well known to be crucial to staying emotionally healthy. Many studies have shown a positive link between exercise and improved moods. The long-term benefits of exercise on the heart, lungs, bones, nerves, and muscles apply to people with MS just as much as they do to the general population.

But MS symptoms may temporarily worsen during exercise and the period of fatigue afterwards may be somewhat long. In the past many people with MS were advised not to exercise.

More recent studies of vigorous training by people with MS who were able to walk showed training improved fitness and muscle strength and reduced depression and fatigue. People in exercise programs not only enjoyed an improved sense of well-being but many found their bowel and bladder control also improved.

Most people with MS can participate in comfortable exercise. It is essential to obtain an exercise prescription from a physician if disability or other health problems influence performance. And there are a few other guidelines.

The exercise must be mild to moderate with warm-up and cool-down periods. Exercise sessions should be brief at first and lengthened as fitness improves. It is very helpful to “feel” the exercise level and not to push too hard too soon. It should take about an hour to get over fatigue after exercise and the person should feel well the rest of the day.

Both exercise ability and recovery time are usually improved by keeping cool. It is best to exercise in a cool environment or to use cooling baths before and after sessions. One effective technique is to sit in a tub of tepid water and slowly add cooler water until the lower half of the body is noticeably cooled. There are also special cooling vests, neck wraps, and headbands to be worn during exercise that may help.

  • Relax
    Together with exercise, programs for relaxing physically and mentally, such as yoga or meditation, are of great importance. Other techniques, such as massage, progressive relaxation, tai chi, and using a mantra (“slow down” is a good one), help establish a sense of well-being. They are proven tools for reducing life’s daily tensions. Meditation and other relaxation techniques require practice and should be learned when stress is at a minimum.
  • Avoid the negative cycle
    Fatigue and depression both prompt people to stop doing things they once enjoyed and to have fewer contacts with friends and

What begins as feeling tired and blue easily becomes a negative cycle. Reduced activity further erodes physical well-being which leads to less strength for activity, more fatigue and depression, and even less physical activity. Medication to relieve fatigue or depression may be needed to break the cycle once it is established. But the person with MS can understand the nature of this cycle and take action to break away early on.

  • Don’t underestimate the value of your spiritual beliefs
    Faith is a very important part of most people’s lives. Studies of people with chronic illnesses find that those who had a strong religious or philosophical belief system did better than those without such a source of support. Even the simple act of regular attendance at spiritual gatherings appeared to improve coping, perhaps because it gave those individuals a feeling of belonging and a sense of group support.
  • Get a doctor you feel comfortable with
    Any doctor can prescribe medication and provide periodic examinations. Having a physician who can discuss personal matters and explain complex issues is another matter.

It is legitimate to shop for a doctor who is knowledgeable about MS and able to spend time listening and educating patients. Multi-disciplinary MS clinics have much to offer both families and individuals. National MS Society chapters can refer callers to a range of local health-care providers who understand MS and to clinics where people with MS find the quality medical care they need.

  • Plan on having some fun
    Recreation is often the first thing people cut out when they pare down regular activities. It’s understandable, but the fact remains that playing and taking part in social activities can reduce stress and refresh spirits. The people who are able to laugh and enjoy humor generally feel better about themselves and manage their lives more effectively.
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