Navigating intimacy with your partner can be hard enough without the added stressors of ME/CFS and fibromyalgia. We realize that discussing intimacy and sex may be taboo for some, but are nevertheless integral in a holistic view of health for every individual. We urge you to begin to break apart this taboo if it exists between you and your partner.

In October’s Education Meeting, we were pleased to host Dr. Jordan Rullo, a Clinical Health Psychologist, Certified Sex Therapist, Adjunct Assistant Professor of Clinical Psychology in the Department of Psychology at the University of Utah, and a Research Collaborator in the Division of General Internal Medicine at Mayo Clinic in Rochester, Minnesota.

In this presentation, Dr. Rullo addressed how chronic illness can change intimacy, but does not have to eliminate it from your life.  As a thought provoking reminder to those healthy and unwell, Dr. Rullo stresses that the ultimate goal of sex is connection, not performance or orgasm. Changing routines and expectations surrounding sexual connection does not undermine the end goal. To this end, she proposed the model of Good Enough Sex on Good Enough Days.

Good Enough Sex
To assess “good enough sex,” we need to be aware that people rate sex as “very good” for both partners less than half the time, which means that expecting sex to always be incredible is unrealistic. Further, people experience sexual desire in different ways. Some people experience spontaneous desire, which means that they spontaneously want sex. Other people experience willingness desire, which means they do not spontaneously want sex but they are happy to continue once they get going, so long as certain baseline conditions are met.

People with ME/CFS and fibromyalgia are much more likely to predominantly experience willingness desire, rather than spontaneous desire, when it comes to having sex. Therefore, it’s important to remember that developing an intimate connection can sometimes be the first step to wanting sex. Many healthy partners, on the other hand, experience spontaneous desire. Both types of sexual desires are normal and valid, but it is important to be aware of the different mindsets.

Good Enough Days
While willingness desire is useful for understanding how we might experience sexual desire, it means nothing if the baseline conditions for willingness desire are not met. To describe this, Dr. Rullo gave the analogy of sexual desire being like the speed of a car; day to day realities can step on the gas pedal, while others step on the brake pedal.

Things that step on the gas may include emotional connection, partner appearance, or novelty. Things that step on the brakes include physiological strain (such as pain, fatigue, or aging), emotional strain (such as high anxiety, depression, or distraction), relationship strain (such as discord, lack of emotional intimacy, or lack of privacy), or socio-cultural factors (such as family troubles, limited sexual education, or conflicting values).

Ultimately, it is far more important to take pressure off the brakes than to put pressure on the gas. Most of us begin to think of ways of accelerating with the gas pedal, but the gas pedal is useless if the brake is weighted to it’s limit. Dr. Rullo’s recommendation is to ease off the brakes by removing barriers or making accommodations that will support and allow for an intimate connection to occur.

Continuing on with the gas pedal, brake pedal metaphor; Dr. Rullo advises to make four columns on a piece of paper – one column each for physiological, emotional, relationship, and socio-cultural strains – then write down everything that might be impacting your desire for intimacy. Next, identify one to two things in each column that add pressure to your brakes the most.

Finally, problem solve ways to help ease these issues. Dr. Rullo cautions us that while illness-related issues often seem most obvious as slamming on the brakes, they are not always the biggest issues impacting sexual desire and can be assuaged by modifications and communication with your partner.

Pain and fatigue, however, are often serious issues for those with ME/CFS and fibromyalgia. To accomodate for this, Dr. Rullo offered several recommendations to help:

1. Prepare for sex like it’s an exercise routine. The energy it takes to have sex is about equal to walking briskly uphill. To help with this, use principles of pacing, take medications where they will be most helpful, and go as slow as your body needs.
2. Plan to have sex during the time of day that you have the most energy and the least pain.
3. Choose sexual positions that are the least tiring and painful for you.
4. Look into sexual accessories that support your body during sex and stimulate you without using as much energy. Vibrators from www.lelo.com and sexual furniture from www.ergoerotics.com are great options.

Energy and pain can be completely unpredictable for people with ME/CFS and fibromyalgia. Dr. Rullo focuses on tactical ways to improve communication, understanding and intimacy between partners. These occur through a bid and counter-bid process. When your partner tries to initiate conversation, sex, or any number of things, they are making a bid to connect with you, when ignored or deflected can cause hurt feelings and rifts to occur. Counter-bids, therefore, are a way of saying “I want to connect with you too, but I am not able to be intimate in that way- here is a different way we can connect.”

Expand your Menu of Intimacy
Cuddling, conversation, showering together, or massages can all be good examples of counter-bids. It’s important to recognize that intimacy can take many shapes and forms and that expanding our “menu” of what helps us create an emotional connection is vital. Several online resources offer wide sexual and intimate menus, some couples find it useful to independently rate suggested activities, then try out activities that both partners rated highly.

In essence, counter-bids are a good way to redirect willingness desire when you do not feel up to sex but still want to connect with your partner. Therefore, it is very useful to have several good counter-bids planned out ahead of time, so you are ready with options when the need arises.

How do I talk about this with my partner?
Choose a time to talk with your partner that is not during a sexual intimate exchange and discuss willingness desire, spontaneous desire, and what may be impacting your individual “brake pedals”.  By talking about where both of you fall in these categories, you begin the joining together in intimacy. Understanding the bidding and counter-bidding process of connection in your relationship is also helpful.

Lastly, another tactical way to build intimacy with your partner is to engage in stress reducing conversations. The principles of stress reducing conversations are:

• Set aside time to talk with each other for 20-30 minutes at the end of every day.
• Support your partner, and never side with the enemy e.g the disbelieving doctor …
• Empathize with how your partner feels.
• Do not problem solve unless your partner specifically asks for that.

Presence, attention and listening are the core aspects of building an intimate connection. These tools can improve the day-to-day challenges and stresses faced by those lives impacted by chronic illness. Find more tools here.

We gratefully thank Dr. Rullo for her insightful presentation. We realize that discussing intimacy and sex may be taboo for some but are nevertheless integral in a holistic view of health for every individual. We urge you to begin to break apart this taboo if it exists between you and your partner.

If this content has been useful to you or a loved one, we invite you to explore our online library, read our blog, and subscribe to our monthly newsletter. We thank you for your continued support as we press forward in our vision to create a world where patients with ME/CFS and fibromyalgia are readily diagnosed, effectively treated, and widely met with empathy and understanding.

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