Expert Voices: Dealing with sex and intimacy issues for people with MS
In this installment of our “Expert Voices” series, Multiple Sclerosis News Today asked psychologist Gayle Lewis, PhD, to answer some of your questions related to sex and intimacy for people with multiple sclerosis (MS) and their partners.
Gayle Lewis is a psychologist and psychoanalyst currently in private practice in New York City who has worked clinically for 31 years. She is a certified MS specialist and a National Multiple Sclerosis Society Partner in MS Care. Additionally, she is a clinical specialist in the treatment of trauma, eating disorders, and addictions — overlapping issues often seen in conjunction with an MS diagnosis. She is on faculty and a steering committee member of the Eating Disorders, Addictions and Compulsions Service at the William Alanson White Institute. Lewis is also a board-certified tele-behavioral health specialist, and has recently launched an extension of her private practice that particularly serves the MS population, The Telepsychology Practice, a multiple sclerosis telemental health service provider.
What common challenges arise in intimacy between people with MS and their partners? What advice do you have for these obstacles?
Gayle Lewis, PhD, is a psychologist and psychoanalyst specializing in MS. (Photo courtesy of Gayle Lewis)
Just as with any relationship, sexual intimacy between partners is another form of communication. If communication in other areas of the relationship is problematic, that will be reflected in a couple’s sex life. Being direct and honest about feelings in the couple’s relational space is vital, and it needs to happen continuously, especially when issues of concern, conflict, and challenges arise.
Because a common MS symptom for men is sexual dysfunction, in not being able to achieve an erection or maintain an erection, if the man’s felt shame about this symptom is not acknowledged with his partner or addressed with his physician, sexual activity will be disrupted. Erectile dysfunction can be easily treated, and a neurologist or urologist can prescribe one of several medicinal or mechanical options. Then, regular and prolonged erections can more seamlessly occur so sexual intimacy will not be affected.
For women, MS can sensorily affect one’s ability to feel vaginal or clitoral stimulation, can prevent the vaginal area from lubricating, and overall can interfere in moving toward orgasm. Again, these issues can be helped, first by communicating with the woman’s partner and also with the woman’s neurologist, the latter being an undertaking usually not brought up by a neurologist and often felt to be too embarrassing for the patient to mention to the doctor. For a woman with the aforementioned challenges, there are lubricants, vibrators, and other sexual stimulators that can help and be used as part of sex play with the partner to help her feel aroused and even get to an orgasmic state.
Also, some MS symptoms like pain, spasticity, numbness, fatigue can make certain sexual positions difficult to maintain, much less situate oneself into when trying to be intimate with a partner. The person with MS firstly needs to become more aware of their body and its sensations, sensitivities, areas of pain, and places of pleasure, what tires them and what limitations they have — limitations that might not be static, but could change from day to day, hour to hour. If this doesn’t happen, how is a partner to know how to work with the person who has MS so that sex can be pleasurable? One suggestion I have is for both partners, each on their own at first, to do body mapping.
Tell us more about body mapping.
If each person is not fully in touch with their own self-pleasure and comfortable with masturbatory exercises (some geared toward reaching orgasm, some simply for body pleasure exploration), how can each communicate to the other their needs?
Body mapping is a technique whereby the person privately and safely takes the time with eyes closed to explore their body using different amounts of pressure with one’s hand, a feather … with anything that feels good. Then, take note when something feels good, bad, painful, and everything in between. Next, do the same exercise with the partner, this time with the partner’s hand or feather, etc., moving across the other’s body, one at a time. Do this gently (or with more pressure, if that is preferred), with the subject of the touching being very open and clear about what does and doesn’t feel good. Both partners should do this.
This is not an exercise about arriving at orgasm; it’s about each becoming more familiarized with one’s own body and its pleasure and discomfort zones, and then with those of the partner. Having this knowledge and communicating about these sensations openly and regularly can make a world of difference in the sexual intimacy between partners.
If a couple’s sex life has faltered due to MS, what might be helpful in putting it back on course?
MS can be a relationship shapeshifter in that its presence regularly changes a relationship’s concrete matters, such as altering the balance of household chore sharing, changing responsibilities in and outside the home, and altering communication between the dyad, often due to fear, shame, resentments, anxiety, and depression.
Depression can alter libido and arousal capacity. And body image concerns due to MS can make a person feel less attractive and desirable, even if their partner does not share those opinions and continues to find their partner very arousing.
Performance anxiety is usually discussed more in terms of a man’s capacity to maintain an erection, and because MS itself and some medications can impact penile functionality, of course, performance anxiety can add to some of the challenges in being intimate with one’s partner when MS invades. Medications and penile tools can help with erectile dysfunction, as mentioned before.
Performance anxiety for women is not discussed as much and ought to be discussed more. For women, the largest sex organ is the brain, the next being the clitoris with its 8,000 nerve endings, all of which may or may not be impacted by MS or medications.
There is a medication that can help women with arousal, Addyi (flibanserin). But if a woman with MS is “in her head” and flooded with body insecurity, shame, or concern about taking too long to achieve orgasm, it doesn’t matter if the arousal pill works to lubricate her. If she is not fully psychologically present, it will be challenging to have gratifying sexual intimacy.
Not to be too repetitive, but if a person with MS is not willing to truly get to know their body and what turns it on or off, and communicate this clearly and regularly with their partner, a gratifying, intimate sex life will be hard to achieve.
How might a couple address sex life challenges caused by fatigue?
Fatigue, a very common MS symptom, is often the symptom that encourages the least compassion or understanding from those other than the person experiencing it. It can’t be seen, sometimes it doesn’t make sense (as if most things in life do make sense and therefore are legitimate), and it seems to come out of nowhere, making it quite elusive both to the sufferer and others. Often, it makes no sense to the person with fatigue to wake up after an eight-hour night’s sleep and feel utterly exhausted. If this makes no sense to the person experiencing it, it likely makes less sense to the partner perhaps wanting to be sexually intimate in the morning before getting out of bed.
However, there are precursors to the onset of fatigue that can be managed so that either the fatigue doesn’t arise or, if it does, it can be managed better.
I’m often thought of as a party pooper when it comes to discussing managing fatigue. When MS patients feel symptom-free and energized, some take that as permission to charge ahead with the day, exerting themselves in ways usually limited by MS. I might suggest not going full force on those days. The day after, they likely will collapse from exhaustion and fatigue. Fatigue management requires mindfulness, ongoing attentiveness.
There must be ongoing communication between couples about how fatigue is present, how it feels, what it limits, what it allows. And just as with any other MS symptom, there must be compassion for how frustrating fatigue’s interference can be to both partners when engaging sexually or intimately.
I’m sure that, on the “MS holidays,” the patient’s partner is equally thrilled to have an energized person to do activities with, with the robustness that allows for full enjoyment of activities, regardless of the next day’s likely collapse. But if more regular sex was on the table as something each partner is interested in, maybe consider not going full throttle on high-energy days and be more mindful by holding back how energetically one engages. Mindful fatigue management practices can be so very useful in building energy reserves.
Do you have encouragement for someone who’s uncomfortable bringing up sexual dysfunction with their clinician?
Unfortunately, because many neurologists do not bring up areas of sexual function during routine visits, mostly due to appointment time constraints, it’s the patient’s responsibility to make sure their doctor knows of sexual problems. That’s often a very uncomfortable conversation to broach, even if the doctor is doing nothing to contribute to the embarrassing feelings. People feel ashamed acknowledging to themselves that they struggle with intimacy issues, much less admitting it to someone else.
When I worked at NYU’s Langone’s Medical Center’s MS Comprehensive Care Center, I would ask my patients about everything regarding their MS, including issues they might be having around intimacy and sexual function. I would encourage them to bring up what we discussed with their neurologist or with one of the amazing nurses we had in our center so that their concerns could be addressed in a safe and normalizing way.
In the absence of having the bridge of starting the conversation with a psychologist, I would suggest finding someone at the neurologist’s office who feels “safe” to broach this topic with.
What can couples explore to attain physical and emotional intimacy outside of sex?
If there isn’t honest and open communication, it’s impossible to attain both physical and emotional intimacy in a mutually satisfying way. Talking honestly and being vulnerable with one another can be extremely erotic and sexy, and act to intensify emotional intimacy. As mentioned earlier, body mapping is an excellent way to participate in physical intimacy with one another, since it’s not about achieving orgasm and all about truly learning what feels good, sensual, and arousing.
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Expert Voices is a monthly series involving a Q&A with an expert in the MS space about a specific topic. These topics and questions are curated from a survey in which we ask readers what they want to learn more about from experts.
Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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