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Intimacy – What to Do When ME/CFS or FM Becomes a Third Wheel in Your Relationship

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Dr. Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.

Six Strategies for Improving Intimacy
(Part of a Free Series on “Recasting Relationships & Building Support”)*

When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple’s sex life.

But, like other aspects of long-term illness, intimacy problems can be reduced as well.

When we asked people in our Self Help program to describe the effects of their illness on their sexuality:

• All those who responded said that illness had reduced their sexual activity.

• Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications.

• Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.

Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways.

Here are six of the most common adaptations.

1. Talking

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!”

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.”

2. Alternative Activities, In Bed and Out

Another very common 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 by manual stimulation and also oral sex.”

• 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, “We still hug, kiss and say ‘I love you’ lots. I feel we have a very strong and healthy relationship.”

3. Planning

Another common adaptation is planning for sex:

• Several people mentioned taking extra rest or reducing their activity level on days they anticipated having sex.

• Also, 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.”

• Others mentioned being mindful of time of day. Pain and other symptoms may be lower during certain hours of the day. By timing intimacy for those times, couples minimize discomfort and increase pleasure and enjoyment.

• Another couple is increasing the frequency of sex through 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.”

4. Flexibility and Experimentation

Given the often unpredictable course of CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved.

• One person said, “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. Addressing Pain and Hormone Problems

Several people reported that their sex lives improved after treatment of pain and hormone problems. People reported treating pain by the use of pain pills, topical ointments, massage, and heat and by adapting how intimacy occurs.

There are several factors involved in the use of medication.

• One solution is for the person who is ill to time the taking of pain medication so that it will be at peak effectiveness when you plan to have sex.

• The type of pain medication is also important. The person with pain may want to avoid narcotic pain medications and tranquilizers, which dull the senses as well as reducing pain.

• Other means of pain reduction include taking a bath before sex, stretching, and massage.

• Pain can be reduced by using positions that are comfortable, by changing positions periodically during intimacy, and by alternating activity and rest.

Another pain control approach is the combination of distraction and meditation.

• Distraction means reducing pain by placing attention elsewhere, focusing on sensations, both those given and those received.

• Also, concentrating on mental images of making love keeps the mind focused on pleasure, distracting attention from pain.

Several people in our groups also commented on how their interest in sex had improved with hormone treatment – either estrogen or testosterone or both.

• One 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. Emphasis on Caring

A number of 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 sharing time together, touching, caressing, and cuddling.

In Conclusion

CFS or fibromyalgia do not have to mean the end of sex. Using flexibility, experimentation and good communication, couples can continue to enjoy sex and may be able to strengthen their relationship. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can foster closeness and caring.

To Learn More…

Read the other chapters in Dr. Campbell’s series on Recasting Relationships & Building Support, including:

Eight Ways to Improve Relationships

Recasting Family Relationships

How Families Can Help People with CFS or FM

Seven Tips for Improving Communication

Tips for the Caregiver

Finding and Working with Doctors

Building a Support Network
Note: This article is reproduced with Dr. Campbell’s kind permission from his CFIDS & Fibromyalgia Self-Help website (www.cfidsselfhelp.org)

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