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Sexuality and MS
The information in this section is from the booklet Sexuality and Multiple Sclerosis.
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Sex and sexuality
During a routine physical check-up, Joanne® new doctor asked, "Have you noticed any changes in your sex life as a result of MS?" Although she felt comfortable talking about sex and had enjoyed her sexual relationship with Bill both before and after their marriage, she was a little taken aback by the question. Her attempt at a non-committal reply, "Well, we've had our ups and downs", made them both laugh at the double meaning but didn't lead to further discussion.
Thinking about it later she realized that a fair bit had changed since her diagnosis five years ago. She and her husband made love less often now, partly because she felt so tired, but also because neither of them seemed as inclined to get things started. They had always incorporated a lot of kissing and manual stimulation into their sex play so her recent need for more direct stimulation to reach orgasm hadn't required a great adjustment to date. She did feel apprehensive about bladder "accidents" and suspected that this concern, along with changes in her genital sensation, balance and energy level, had made her less responsive. Bill was understanding but she couldn't help thinking that he must be turned off by her condition.
She was certainly having to work harder to feel good about herself in the face of these changes and particularly because of the mood swings and fatigue she was experiencing. In retrospect, she wondered whether her doctor was asking about the effect of these physical changes on her sexual response or about the feelings surrounding her sexuality. She also wondered whether other women and men, with MS had similar experiences and how they coped.
The issues facing Joanne involve many different aspects of her "sexuality", a term that encompasses physical sexual responses (including the capacity to experience sexual excitement and orgasm), fertility and potential parenthood, her perception of her own appearance and attractiveness to herself and her partner (or to potential partners were she not in a relationship), her ability to engage in sexual activity (affected by fatigue, balance, spasticity, etc.), her communication and relationship with her partner (affected by mood changes), her ability to carry on with day-to-day life activities and her sense of integration, affirmation and acceptance in the larger network of family, friends and society. Linked to all of these are Joanne's self-image and self-esteem, the intangible dimensions of sexuality that arise as byproducts of our feelings about ourselves and the reactions of others to us.
Dr. George Szasz, a therapist and researcher at the University of British Columbia, notes that changes in self-esteem and self-image that sometimes accompany disabling conditions are often the result of alterations in specific aspects of sexual and social life. Our feelings about ourselves are shaped by what we think we should be able to do and by how others react to us. Will she still find me attractive? Can I be a good lover? Why does it take me so long to get turned on? Will my erection last? Can I have an orgasm? How can I have a sex life when I'm always so tired? Will my partner continue to love me? What if I lose bladder control during sex? How much should I tell a potential partner and when? Can I get pregnant? Or father a child? Won't I make my partner feel insecure by suggesting changes to our sexual "routine"? How do I get interested in sex when I'm dealing with everything else about having MS? How can I get people to see me as a sexual person and not only as someone with a disabling condition?
Since sex in our society is strongly linked to self-esteem, our "performance" in these physical and partnership spheres of sexual life can have quite direct effects on self-image. Being able to communicate about such topics with partners or potential partners is one way of getting to the broader and deeper issues of sexuality that involve self-acceptance, trust and love. Those who have no particular wish to become involved in a sexual relationship may nevertheless have genuine concerns about such issues and about the way they are sometimes perceived and stereotyped because they have MS. In the next three sections, changes in sexual functioning and relationships that sometimes occur with MS, possible explanations for the changes and strategies for communicating about them will be discussed.
Sexual changes experienced by people with MS
It is common for people adjusting to the uncertainties of MS to experience a decline in their sexual interest, frequency and enjoyment. These effects are assumed to arise either directly as a consequence of the condition (e.g. functional effects on sensation, movement, etc.), indirectly as a result of the psychological and social stress and distraction accompanying any major life change, or interactively, as a combination of both (Barrett, 1984). Not surprisingly, partners are also affected since they too may experience the understandable anger, guilt, frustration and depression about their changed situation.
What may be surprising is the extent to which self-defeating attitudes and assumptions about sex in general and about sexual "performance" and sex roles in particular, can magnify whatever direct effects MS might have on sexual desire, arousal, orgasm or activity.
What kinds of changes in sexual functioning do people with MS encounter? George Szasz and colleagues assessed 73 men and women with MS on a sexual functioning scale (SFS) to determine what proportion had experienced reduction or cessation of sexual activity (Szasz et al, 1984a). Half the sample was under 40, 64 percent were female, 62 percent married, 38 percent single, divorced, widowed or separated and half experienced onset of MS less than 10 years ago. A total of 55 percent said they were as sexually active as before MS and/or that they weren't experiencing sexual problems such as "changes in previous genital sensations, erections and ejaculation in men and vaginal lubrication and orgasm in women". The remainder were either less active and/or experiencing problems or they were sexually inactive (for weeks, months or years) and over half of this group was concerned about the situation and wanted to "regain the previous pattern and functional ability".
Among those who said they were concerned, the most common complaints were: "cannot satisfy my partner", "don't feel like sex", "cannot satisfy myself", "cannot be like a man", "partner doesn't feel like sex" (Szasz et al, 1984a,b). Many of the "traditional" sexual problems described by people with MS are also found in the general population and regardless of their cause, we are likely to have feelings about them. This means that looking for a "physical" explanation for a particular problem (e.g. lack of erection, lack of orgasm) should not lead us to discount the "psychological" factors involved. Nor should we exclude the social factors that limit the sexual rights and opportunities of people with physically disabling conditions. While it is tempting to begin with the physical aspects of sexuality and MS, since they are often of immediate interest to those experiencing changes in their sexual response, the social dimension of sex is so important that it should provide the context in which the functional questions are addressed. And since many of the examples in this section may appear to be aimed more at couples or those already in long-term sexual relationships, I will begin with those who are not.
Communicating about sex
If intimacy is established through effective communication (Masters et a, 1986), it is a shame that more of us weren't taught the needed skills when we were younger. The sexual issues facing people with MS and their partners (Kalb et al, 1987; Carrera and Kelley, 1979) require effective communication. Talking about sex can be threatening, particularly if we fear that it may lead to rejection, to loss of spontaneity or to increased tension in an already stressed relationship. We may worry that raising a dissatisfaction will seem like a criticism of an already burdened partner.
Common issues people may want, or need, to discuss in their sexual relationships include: frequency and types of sexual activity (e.g. introducing new sexual practices), use of fantasy, desire for more emotional intimacy, desire for less specific role expectations (who initiates, positions), reduced focus on intercourse and orgasm, more non-sexual touching, more tenderness and gentleness, more assertiveness and passion, not being taken for granted, more open communication about any of the above and reassurance that you are loved and needed.
Intimate relations can stumble if partners expect that sex should always be a memorable, passionate experience. Realize that just as your mood can change, or your physical feelings ebb and flow, so too can sexual experiences range from ecstatic peaks to fizzled-out fiascos. It isn't necessary to analyze what went wrong whenever sex isn't superlative. Instead, its useful to talk with your partner to be sure that you both have realistic expectations about sex rather than impossible dreams that can only lead to disappointment.
Strategies for dealing with sexual problems
Most of the sexual concerns experienced by people with MS can probably be dealt with through information about how to enhance their sexual lives, improved communication, reduction of stereotyped sexual performance expectations, occasional psychological support from peers or others, practice of pleasurable sexual behaviours and avoidance of frustrating ones. It doesn't hurt to have adequate privacy, income and social support as well. The point is that seeing a sex therapist need not be the immediate response to something perceived as a sexual problem although sex counselling and therapy are part of the spectrum of possibilities available.
For more information see:
Source - Sexuality and Multiple Sclerosis by Michael Barrett PhD. Reproduced with permission of author and Canadian MS Society. © 1991 Canadian MS Society. All rights reserved.