The physical changes experienced by people who have multiple sclerosis can alter their view of themselves as sexual beings, as well as their perception of the way others view them. The psychological and cultural context in which physical changes occur can adversely affect self-image, mood, sexual and intimate desire, and the ease or difficulty with which persons with MS communicate with their partners.
One of the notions about sexuality that prevails in Western culture is a “goal-oriented” approach to sex. In this approach, the sexual activity is done with the goal of having penile-vaginal intercourse, ultimately leading to orgasm. The sexual behaviors labeled as foreplay, such as erotic conversations, touching, kissing, and genital stimulation, are seen as steps that inevitably lead to intercourse rather than as physically and emotionally satisfying sexual activities in their own right.
This Western view of sexuality leads to spending a great deal of time and energy worrying about the MS-related barriers to intercourse and orgasm (“the goal”) rather than seizing the opportunity to explore physically and emotionally satisfying alternatives to intercourse. The capacity to discover new and fulfilling ways to compensate for sexual limitations requires that couples be able to let go of preconceived notions of what sex should be and focus instead on openly communicating their sexual needs and pleasures without fear of ridicule or embarrassment.
Decreased Libido and Sexual Avoidance
According to the National MS Society, decreased libido is much more common in women with MS than men. To date, there are no published clinical trials of medications that restore libido in MS. When loss of desire is due to secondary dysfunction such as fatigue or depression, treatment of the interfering symptoms often restores libido. When a person’s libido is diminished by MS, he or she may begin to avoid situations that were formerly associated with sex and intimacy.
Sexual avoidance serves as a source of misunderstanding and emotional distress within a relationship. The partner may feel rejected, and the person with MS may experience anxiety, guilt, and reduced self-esteem. Misunderstandings surrounding sexual avoidance frequently compound the loss of desire and diminish emotional intimacy in relationships. Some men and women who have sustained loss of libido report that they continue to experience sexual enjoyment and orgasm even in the absence of sexual desire. Remember - USE IT OR LOSE IT.
Changing one’s signals to initiate sexual activity can be assisted by conducting a sensory body mapping exercise to explore the exact location of pleasant, decreased, or altered sensations caused by MS symptoms. Body mapping is typically used to help compensate for primary (genital) or secondary (nongenital) sensory changes, but it can be a useful first step in the enhancement of physical pleasure and emotional closeness, as well as sexual communication and intimacy.