For those couples wanting to continue sex, experimentation, good communication and flexibility are fundamental. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can still foster closeness and caring.
©Porechenskaya / Adobe Stock
By Bruce Campbell, PhD
Many people with a chronic illness ask themseleves: ‘what can I do when chronic illness affects my sex life?’ People with a chronic illness, including Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia, often find their illness affects their sex life, often with far-reaching consequences.
In a series of discussions groups conducted by the ME/CFS & Fibromyalgia Self-Help Program people were asked how their illness affects their sex life. All of those who responded said that illness had reduced their sexual activity, or they had given up sex as a result of their illness. Most also described how they had adapted this part of their lives to the limits imposed by illness. As one person wrote, “yes, chronic illness affects my sex life … it is just another side effect of being ill.”
Many people also mentioned having a much lower level of sexual desire than before. Causes of their reduced libido included ongoing fatigue and pain, and the side effects of medications.
As one said, “I was unable to be interested when I was so tired, I could hardly stay awake and in so much pain that I could think of nothing else but how I could control it. This is how my chronic illness affects my sex life.”
Other causes of sexual problems included the effects of menopause, relationship strains, and the medical issues and/or impotence of their partner.
What strategies can I use when my chronic illness affects my sex life?
Many respondents told us that they used a variety of strategies to either enable them to adapt their sexual life to their illness, or to connect with their partner in other ways. Here are six strategies they told us are useful when a chronic illness affects their sex life:
1. Talking about sex
Reduced sexual activity is a common source of strain in relationships, but effective communication can help. Several people reported that their relationship with their partner improved after they talked openly about their reduced interest in sex.
As one said, “I explained that I still loved him and felt the same (or more strongly) about him, but I just couldn’t show that through initiating sex…I have no desire for self-pleasure either. Explaining that sure made a difference to his acceptance of my state! This is how illness affects my sex life.”
Another reported, “What helped my husband most was understanding that the lack of sex was nothing that was his fault, but just a manifestation of my illness.” Others reported that they benefited from open communication in bed. One said, “I let him know if a certain position hurts, and we change positions.”
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2. Explore alternative activities, in bed and out
Another pervasive theme was adapting to illness by focusing on alternatives to conventional sex, both in bed and out. One person wrote, “The times I am not up to having intercourse, he knows I am usually up for some cuddling and happy to satisfy him another way.”
Others wrote of alternatives to intercourse, for those who think that appropriate. “When chronic illness affects my sex life, I tell myself that I don’t have to have intercourse to be sexually connected…You can be satisfied with manual stimulation and also oral sex.”
Others have found other ways to express their affection when chronic illness affects their sex life, through hugging, kissing, and holding hands, through words of appreciation and thoughtful acts, and through shared activities like going out for dinner together, watching a favorite TV program or giving one another a massage.
One said, “When chronic illness affects my sex life, he rubs my back, and I rub his feet. We hug and share a kiss here and there…I make sure he knows how much I appreciate what he does for me.” Another wrote, “We still hug, kiss and say ‘I love you’ lots. I feel we have a solid and healthy relationship apart from the lack of sex.”
3. It is all in the planning
Another universal adaptation is planning for sex. Several people mentioned that when chronic illness affects their sex life they take extra rest or reduce their activity level on days they anticipate having sex. And a number said they and their partners plan “dates.”
One said, “What my husband and I have learned is that we need to schedule a ‘date.’ I actually put it on my calendar.” Another said, “The ‘date’ planning has worked for me because I tend to do less of the things that I know will cause me residual pain.”
Another couple is increasing the frequency of sex by making a commitment to having sex once a week. The wife reported that sex is becoming less painful, and her husband “is much more cheerful and doing more around the house.”
“You don't have to have intercourse to be sexually connected...You can be satisfied with manual stimulation and also oral sex.”
4. Go ahead and experiment: be flexible
Given the often unpredictable course of many chronic illnesses, including ME/CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved. One person said, “When chronic illness affects my sex life, we’ve experimented with timing (morning is best), position (I seem to do best on my side) and lubricants.”
Others use observation as a basis for experimentation. One person wrote, “I noticed that in the summer, I had more desire and realized it had to do with the heat, so we started to shower together.”
5. Treating the pain and addressing hormone problems
Pain or the anticipation of pain can be a potent inhibitor of physical pleasure. To manage this pain, people reported treating it by using topical ointments, pain pills, massage, and heat. They also said that another way of getting around pain is by changing sexual positions. Several people also reported that their sex lives improved after treatment of pain and hormone problems.
Several also commented on how their interest in sex had improved with hormone treatment, either estrogen, testosterone, or both. One woman said that testing showed that both her estrogen and testosterone levels were low. Treatment of the latter “not only helped libido but my energy level as well.” Hormone problems can also affect men.
6. Put more emphasis on caring for your partner
Several people distinguished between intimacy and sex and said they and their partners focused on closeness and mutual caring. One wrote, “Sex is important in a relationship, but I don’t feel that it is the most important. I think all of the little everyday things that we do for each other and being supportive of each other is what really makes a marriage.”
Another said, “My husband and I have found we don’t NEED to express our affection sexually…For us, sex does not compare to the kind of fulfillment, which is a beautiful thing when shared between two people who are filled with warm, tender, loving feelings toward each other.” She wrote of expressing affection through problem-solving, sharing time together, touching, caressing, and cuddling.
For those couples wanting to continue sex when chronic illness affects their sex life, experimentation, good communication and flexibility are fundamental. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can still foster closeness and caring.
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What can I do when chronic illness affects my sex life? was previously published by ‘The ME/CFS & Fibromyalgia Self-Help Program.’