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

SEXUALITY AND MS

Individuals bring their own values and personal histories along with them when they develop a chronic illness. Accommodation to changes in areas of sexuality may be more difficult than changes in any other area of daily living.

Sexuality can be easier to discuss when it is seen as an integral part of human relations. It is important to recognize that work pressures, stress, and fatigue can reduce interest in sex among people who are totally free of any illness. It is quite normal for fatigue to have an effect on a person’s interest in sex—and fatigue is one of the most common symptoms
of MS.

Other MS symptoms, such as numbness or spasticity, may actually change one’s capacity to experience sexual pleasure. But sometimes problems are out of proportion to the change in function caused by MS. For example, one embarrassing experience of losing bladder control during sexual intercourse may discourage a woman from all future affectionate expression, even though her partner did not regard the problem as serious. One embarrassing experience in which a man fails to achieve an erection can lead him to think any display of affection is a potential challenge to his sexuality, and he may choose to avoid that risk.

Such reactions do more than reduce exchanges of affection. They also interfere with communication, and create additional problems in relationships. To avoid a negative cycle of failure and withdrawal, people need to work at sharing their feelings, learning to be flexible about patterns of sexual behavior, and, above all, seeking professional help if change is not forthcoming. But first, some relatively simple steps can help.

  • Physical exhaustion, lack of sleep, emotional turmoil, too much heat, over-eating, or heavy use of alcohol are common distractions that interfere with sexual enjoyment for anyone. A bit of planning can help make romantic encounters romantic.
 
  • A soak in a tepid-to-cool bath may improve sexual performance just as it improves other physical functions for many people with MS.
 
  • Medications to reduce muscle spasms and stiffness can, in many instances, be timed to enhance sexual activity. Whenever possible, avoid taking muscle relaxants, sedatives, or antianxiety drugs just before sex. Antidepressants may also interfere with sexual function. Discuss dosage, timing, and medication type with your physician.
 
  • Reduced genital sensation concerns many people. But erotic sensations can be produced in many parts of the body. The thrill of that first touch can be recaptured with patience and skill.
 
  • Erectile dysfunction—the inability to produce a firm erection—affects many men with MS. There are new medications for improving erectile dysfunction which can be explored with a knowledgeable urologist.
 
  • An indwelling catheter need not stand in the way of sexual enjoyment if both partners desire each other. It can simply be moved aside.
 
  • Always empty the bladder just before sex. However, if there is some leaking, remember that urine is sterile and no real damage is done.
 
  • Medications for fatigue and improvements in fitness from a regular exercise program can both reduce fatigue, which may, in turn, improve sexual function.

And finally, there are virtually limitless variations of sexual technique and expression. Imagination and ingenuity are essential for a successful sexual relationship in the face of physical changes that may be imposed by MS.

Chapters of the National MS Society have information and resource lists and can make referrals to qualified professionals.

 

THE FAMILY AND MS

A bad case of flu or a broken leg may temporarily disorient a family, but most people adjust when the changes mean short-term shifting of roles and responsibilities. Multiple sclerosis is far more complex.

The diagnosis affects everyone in the family. Not only will each member have individual emotions, their feelings will often be out of synch with one another. While one family member is overwhelmed with anger, another may be cushioned in calm denial. Even in loving families, it’s easy for communication to break down.

In addition, family roles may be turned upside down. People unprepared for caregiving may find themselves thrust into that position. A spouse may suddenly feel more like a parent than a partner.

At times, family members try to do so much for the individual with MS that they make the person feel even more helpless. Having too much care can discourage a person with MS from coping independently.

Some families handle their issues at special family meetings where everyone is allowed his or her say. Others do better one-on-one, perhaps in a neutral place, such as a parked car away from home. Family and spiritual advisors may be important resources. And mental health professionals are trained to help people work through their feelings about MS and talk more openly about difficult subjects.

Children in families with MS feel anger, frustration, and grief, just as their elders do. They may also feel neglected. A parent who listens, who acknowledges the child’s feelings and provides encouragement can meet the child’s emotional needs.

All children in a family with MS will probably shoulder new housekeeping responsibilities, a situation that is not necessarily bad. But in some homes, children end up as major caregivers. In doing so, they lose their roles as children. In such situations, people need to call on all possible sources of support—the extended family, social agencies, religious organizations, clubs, and the National MS Society.

 
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