Sclerosis and Your Emotions
by Mary Eve Sanford, PhD, and Jack H. Petajan, MD
THERE AN MS PSYCHOLOGICAL PROFILE?
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:
MS personality profile has ever been demonstrated.
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.
such as depression, grief, and anxiety often fluctuate with
the ups and downs of the illness.
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.
people find information about MS helpful and would prefer
to understand as much as possible about the disease.
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.
TO LIVE MORE
SUCCESSFULLY WITH MS
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
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
- 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:
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
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.