Sclerosis and Your Emotions
by Mary Eve Sanford, PhD, and Jack H. Petajan, MD
is multiple sclerosis?
sclerosis is a chronic disease of the central nervous system (the
brain and spinal cord). It affects about 400,000 people in the United
States today. MS causes breakdown of the myelin sheath that normally
surrounds and protects nerve fibers in the central nervous system
(or CNS). The underlying nerve fiber can also be damaged.
Symptoms of MS range
from occasional numbness and tingling to fatigue, muscle spasms, poor
bladder control, poor vision, paralysis, and more. MS can also affect
the ability to remember, solve problems, or concentrate. MS symptoms may
come and go, or become permanent.
Commonly, MS is a
“relapsing-remitting” disease. There are flare-ups,
also called exacerbations or relapses,
when symptoms become much worse, followed by remissions
or recovery when symptoms lessen. Recovery may be partial
Relapses happen most
frequently at the beginning of the disease and then the rate declines.
For most people a more steadily progressive form of the disease with fewer
or no relapses eventually begins. The progression or worsening usually
occurs slowly over months or years. All
forms of MS may stabilize at any time.
Today, there are “disease-modifying”
medications that can put the brakes on relapsing forms of MS and slow
down its progress. But none of them cure MS. These drugs are the first
medications ever shown to affect the underlying disease process. In most
cases, the sooner MS is treated with one of these disease-modifying drugs,
Be sure to ask your
physician and the National MS Society for information about all current
treatments for MS and for any symptoms you may be experiencing.
the kind of MS a person develops, emotional reactions are likely
to be similar. People feel disbelief, fear, anger, depression, and
books about chronic illness place a strong emphasis upon regaining
control of one’s life, but a battle with MS must not become
a battle against oneself.
If a person’s
sense of self-worth hinges on being able to control all changes, then
his or her ability to adapt to changes will be blunted. Sometimes the
best way to improve a situation is to practice letting go of the need
This work is part
of a process, and not a single one-time challenge. Success probably lies
in gradually redefining family, social, and work roles and relationships,
and learning to exchange some areas of responsibility for others.
Fear is a very common
reaction to chronic illness. The diagnosis of MS implies an unpredictable
lifelong condition and long-term adjustments. It is reasonable to fear
pain, disability, and the unknown. For many people, the greatest fear
is losing control over their lives. Loss of self-esteem may be intense.
These are not easy issues to work through.
studies of people with chronic illnesses have concluded that denial can
be a positive coping strategy as long as it doesn’t interfere with
proper treatment and self-care. Denial is a normal reaction, particularly
at the time the initial diagnosis is made, or later, when MS has been
quiet for a period of time.
To the extent that
denial allows people to set worries aside, it can be a positive “time
out”. At the same time, a decision to use one of the disease-modifying
drugs should be made early on. Scientists know that significant and irreversible
neurologic damage can occur early in the disease while the person looks
and feels fine. If a disease-modifying drug is recommended, it’s
important for the person to work on making it a normal part of life. Taking
a regular injection does not have to be a constant reminder of illness.
Instead it is a positive and hopeful action.
is essential for people with MS to mourn their losses. Mourning can actually
help people adjust. Grieving needs to be accepted with patience and compassion
by both the individual with MS and friends and family.
The pain of grieving
eases over time and is gradually replaced by sadness and by positive accommodations
to the loss. This adjustment is ongoing and does not follow any calendar
or set of stages. Moreover, a period of grieving can be expected to follow
every major loss.
changes imposed by a chronic illness may lead to bouts of clinical depression.
For reasons that aren’t yet understood, depression is more common
in MS than in other chronic illnesses. About half of all people with MS
must deal with a serious, or clinical, depression at some point during
If the person with
MS has a personal or family history of depression, she or he will be especially
vulnerable. In some people, depression is thought to be caused by damage
MS has done within the central nervous system. Or it can be a side
effect of some MS medications. On the other hand, many people without
MS also struggle with depression.
Most people who are
grieving have feelings of sadness or unhappiness — but these feelings
can lift. In a clinical depression, a person loses interest and pleasure
in activities that were once satisfying, and these feelings persist for
weeks. Other symptoms may include changes in appetite, sleep problems,
fatigue or loss of energy, inability to concentrate or make decisions,
uncommon restlessness or uncommon sluggishness, feelings of personal worthlessness
or guilt, or recurrent thoughts of violence, death, or suicide.
often goes unrecognized in our culture because there is a taboo against
expressing negative feelings and an inclination to define emotional problems
Serious or clinical
depression is a disorder that can be treated. After evaluation by a professional,
antidepressant medication and/or psychotherapy are generally recommended
and are generally effective over time.
Despite the likelihood
of a bout with depression, a recent study of a large group of people with
MS showed that after the initial adjustment phase, most individuals were
able to achieve a positive sense of self-worth that
continued throughout their lives.
Feelings of letting
down family and friends or of somehow being responsible for developing
this disease may envelop a person with MS. Young mothers with growing
families, the most commonly diagnosed group, are particularly vulnerable
to guilt about not being able to accomplish their usual tasks.
Children easily amplify
a parent’s guilt feelings. Their anger and frustration — which
stems mainly from their fear of abandonment — increase parental
distress. Children or a spouse may not express fear or anger verbally
but the anger and fear may be there. Both are normal; they reflect the
importance of family attachments. But if they are kept secret, these feelings
can become destructive.
Everyone in the family
will need a basic understanding of what the disease can do. It is important
to define the real enemy as MS. No one is to blame for the problems MS
has produced. Pick a calm time to talk this through.
Feelings of guilt
or shame may be heightened when friends or relatives are short-tempered
or resentful. This is more likely to happen when the person has invisible
symptoms such as fatigue or pain. The reactions are normal; family and
friends are also affected by the stresses of living with MS.
On the positive side,
MS in a family sometimes encourages compassion and helpfulness, especially
in children. Many people say closer family ties develop in time.