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Sex, Intimacy, and Multiple Sclerosis

Sexual relations are a sensitive — and difficult — topic for people with multiple sclerosis (MS), just as they are for people in general.

Sexual dysfunction in people with MS can be caused by a combination of physical, psychological, emotional, and social factors, which can make mutually satisfying sexual relations between adults somewhat challenging.

In MS, damage to nerve impulses can affect arousal and orgasm. Arousal begins in the central nervous system, with messages to sexual organs originating in the brain and running through the spinal cord. Because nerve pathways in MS can be damaged to the point where they disrupt the flow of these messages, problems with arousal and orgasm are common.

Surveys suggest that more than 90% of men and 70% of women with MS are aware of, and affected by, such problems during sex.

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Did You Know?

A 2018 study reported that sexual problems are a frequent but unreported symptom of MS that affects other symptoms patients experience, including depression. More than 60% of the 162 MS patients included in the study reported problems in their sexual relations. Those with sexual dysfunction were also found to have significantly worse MS-related disabilities, including difficulties with exercise and walking, everyday activities, fatigue and pain, as well as depression.

Sexual health is important. You are worthy of experiencing whatever degree of sexual satisfaction you desire. This looks different for everyone, and there is no right or wrong answer. I stopped comparing my own sexuality with that of others long ago. In doing so, I became my own gauge and litmus. Desire is personal, and you are OK with whatever works for you. … I am on my journey and encourage you to embark on yours, too. Only then can we eradicate stigma and embrace sexual health.”

— Jennifer Powell, columnist, “Silver Linings”

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Did You Know?

A 2017 survey showed that many women wish they would have shared concerns about intimacy and personal relationships, among other topics, with their healthcare provider when they were first diagnosed. Of the 1,000 participants, 71% believed talking to their doctor earlier or more openly about these subjects would have helped them in the first six months after their diagnosis. The main reason women cited for not discussing these concerns with a healthcare professional was discomfort in doing so.

“I haven’t had an orgasm for about a year, and that was only because I was on a full dose of steroids. Somehow they knit together the complex series of events to make one possible. … When I’ve mentioned these problems to any of my medical people, it’s pretty obvious they have no answers. Sniff around on the internet and it’s the same. So, discussing it is the only thing many of us have left!”

— John Conner, columnist, “Fall Down, Get Up Again”

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All relationships require energy and effort to go through ups and downs — even without a disease to complicate matters. It is almost inevitable that MS will add to the challenge.

Recognizing that MS affects both partners in a relationship is the first step to coping with MS in personal interactions. Many times, learning to live with the disease brings couples closer together. It is important to never compare relationships with your own, under any circumstances.

People with MS should keep in mind that their partner also is experiencing the disease. It’s normal for an MS patient’s partner to care and worry, but couples should try their best to keep the relationship healthy and balanced. To achieve this, it’s important for both to give and receive in the relationship to preserve communication and intimacy.

Intimacy with your partner is a way of connecting — both verbally and nonverbally. MS can affect your sex life, but intimacy doesn’t always have to be sexual. You may have to discover new ways of being intimate with your loved one. 

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Did You Know?

A 2019 study found that relationships between MS patients and their partners were enhanced when the couple worked together to make lifestyle changes, and to develop skills to improve communication. Results identified three main themes regarding the partners’ perspectives on the impact that MS and lifestyle modification had on their relationship as a couple: providing support, remaining connected, and togetherness.

“We must redefine intimacy. As our disease changes so too will our interpretation of intimacy. Kindness and humor make me weak at the knees. Heartfelt interest in my day softens me. Win me over by showing me selfless compassion. Laughter is a magic elixir. Intimacy is a sacred balance shared between two people. Be it emotional, sexual, or a merging of both, stay true to your wants and desires. MS may alter your path, but the footsteps are yours to take.”

— Jennifer Powell

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Did You Know?

While the effects of MS on marriage and long-term relationships has been well documented, the disease’s impact on dating is still not very well established. A small 2021 study in seven patients concluded that meeting people and dating is challenging for people with MS, but the experience of dating is highly personal and influenced by past experiences and beliefs.

“We do a lot together, but we’re also very independent. We understand that we both need the space and the freedom to do things without the other. These things can be as simple as an evening with friends from work or even a couple days out of town without the other coming along. … We’re also a caretaker for each other. This is especially true as we’ve grown older and more frail. I believe this mutual caretaking has strengthened our bond. … A partnership is important.”
— Ed Tobias, columnist, “MS Wire”