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.
To conduct a "sensory body mapping" exercise (15 - 20 minutes): Begin by systematically touching the body from head to toe (or all those places you can comfortably reach). Conduct this exercise without your clothes on, in a place that is private, relaxing, and a comfortable temperature. Vary the rate, rhythm, and pressure of your touch. Note areas of sensual pleasure, discomfort, or sensory change. Alter your pattern of touch to maximize the pleasure you feel (without trying to obtain sexual satisfaction or orgasm). Next, inform your partner of your "body map" information and instruct him/her in touching you in a similar fashion. Have your partner provide the same information for you (about his or her "body map"). Take turns providing pleasure to each other, without engaging in sex or trying to orgasm. Remember, the emphasis is on communication and pleasure, not sex or orgasm.
Changes in family and societal roles secondary to disability can affect one’s capacity for intimacy and sexuality. The person with MS who has difficulty fulfilling his or her designated work and household roles may no longer feel like an equal partner. The partner of a severely disabled individual may feel overburdened by additional caregiving, household and employment responsibilities. The couple’s intimate relationship can be threatened by the growing tension that results from these feelings.
In addition, the caregiving partner (either male or female) may have trouble switching from the nurturing role of caretaker to the more sensual role of lover. As a sexual partner of a woman (or man) with a disability, a man may begin to think of his partner as too fragile or easily injured, or as a "patient" who is ill and therefore unable to be sexually expressive. If it is practical or culturally acceptable, having non-family members perform caretaking activities helps minimize this "role conflict." When caretaking must be performed by the sexual partner, separating caretaking activities from times that are dedicated to romantic and sexual activities can minimize this conflict.
Accompanying these role changes may be an increasing sense of isolation in the relationship and less understanding of the partner’s struggles and perspectives. The diminishing capacity to understand and work through these issues creates greater isolation and misunderstanding, leading to increasing resentments.
Intimacy and Communication
A satisfying, intimate relationship rests on a broad foundation of trust, open and honest communication, shared goals and expectations, and mutual respect and concern. Intimacy refers to all of the ways, both verbal and non-verbal, in which partners connect with one another and enjoy their unique closeness. Often the biggest problem is the inability to discuss sex and intimacy with one’s partner and learning to talk more comfortably about sexual issues is a process.
It can help to start by putting pen to paper. What physical symptoms interfere with your intimate relations? Which of these symptoms is the greatest barrier? What feelings and associations do you have when you think about MS and your love life? Writing down your thoughts may help put the problems into language and start the difficult process of communicating. It may also help to clarify where the challenges lie, which is the first step toward a solution.
Share this important information with your partner. When MS problems are in the picture, avoiding talk can easily lead to avoiding sex and other intimate contact. For example, sensory changes may make things that used to bring pleasure feel painful or uncomfortable whether it’s holding hands, getting a back rub, or having intercourse. Telling your partner what feels good and what doesn’t becomes crucial to intimate relations when MS changes the body and the mind. It’s equally important to find out what your partner wants, particularly if the intimate activities you’ve previously enjoyed together are no longer possible. Without this kind of communication, your reluctance to hold hands, enjoy a cuddle, or engage in sexual activities can easily be misunderstood by a partner as loss of affection or interest.
Confiding in your partner actually deepens intimacy and may go a long way toward resolving fears. Here’s another example: One common anxiety among people with MS is fear or shame about bladder or bowel accidents. Giving up sexual activity is not a solution to this. Talking over the problem with your partner can reduce the anxiety and discomfort for both of you, and talking it over with your health-care professionals will produce some solutions. Bladder and bowel problems can usually be managed through manipulation of medication and establishing regular eating and toileting schedules. With good communication, a little urine won’t destroy a rewarding sex life. Concealing the problem and the anxieties associated with it might.
The person with MS is not the only one who needs to talk about sexual feelings and anxieties. The well partner’s experience is also affected by the MS. Communicating these feelings can help well partners avoid guilt, grief, and resentment. Cognitive problems can undermine sexuality in subtle ways. People with MS who have developed difficulties with short-term memory or concentration may drift off during sexual activities in ways that can be disheartening to their partner. Indeed, the partner may be more aware of this MS symptom than the person with MS. It requires love and patience to bring these issues out in the open and to seek the needed treatment.
Source: Intimacy and Sexuality in MS by Rosalind C. Kalb, Ph.D. © 2008 National Multiple Sclerosis Society
Assessment and Treatment of Sexual Dysfunction in Multiple Sclerosis by Frederick W. Foley, PhD. Clinical Bulletin / Information for Health Professionals. © 2008 National Multiple Sclerosis Society [Original publication date: 2006]
For Further Information: Healthy Living: Good Sex in Momentum Magazine, Summer 2008.
CH Polman, AJ Thompson, TJ Murray, AC Bowling, and JH Noseworthy. Multiple Sclerosis: the Guide to Treatment and Management, 6th edition. New York: Demos Medical Publishing, 2006. (updated online, 2008).
How to Manage MS-Related Sexual Dysfunction Series: Part One: Understanding How MS Can Affect Sexual Function Part Two: Primary Sexual Dysfunction in Men with MS Part Three: Primary Sexual Dysfunction in Women with MS Part Four: Secondary Sexual Dysfunction in Men and Women Part Five: Sexuality, Intimacy, and Multiple Sclerosis Part Six: Multiple Sclerosis: Sex Toys, Tips, and Tools
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.