What strategies can I use to improve my sex life with a chronic illness?

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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.

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By Bruce Campbell

What can I do when chronic illness affects my sexual relationship?

Many people chronic illnesses affect a person’s sexual relationship with their partner, including Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Both chronic illnesses have far-reaching consequences, touching many parts of a person’s life.



In a series of discussions groups conducted by the ME/CFS and Fibromyalgia Self-Help Program asked people how their illness affects sexuality. 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, the lack of intimacy was “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.” Other causes of sexual problems included the effects of menopause, relationship strains, and the medical issues and/or impotence of their partner.



Six strategies that help when a chronic illness affects a sexual relationship

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 is what they told us:

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!”

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. “You don’t have to have intercourse to be sexually connected…You can be satisfied with manual stimulation and also oral sex.”


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Others have found other ways to express their affection, 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, “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 taking extra rest or reducing their activity level on days they anticipated 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 ME/CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved. One person said, “When the illness affects my sexual relationship, 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.

 


Read more: Hack your post-cancer sex life

 

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.



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This article was previously published by ‘The ME/CFS & Fibromyalgia Self-Help Program.’

 

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