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

INTRODUCTION

What is multiple sclerosis?
Multiple 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 or complete.

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, the better.

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.

 

COMMON EMOTIONAL REACTIONS

Regardless of the kind of MS a person develops, emotional reactions are likely to be similar. People feel disbelief, fear, anger, depression, and guilt.

Many self-help 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 to control.

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 or apprehension
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.

Denial
Recent 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.

Grieving
It 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.

Depression
The 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 their lifetimes.

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.

Severe depression often goes unrecognized in our culture because there is a taboo against expressing negative feelings and an inclination to define emotional problems as weaknesses.

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.

Guilt
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.

 
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