Relationships & Support

At a recent multiple sclerosis (MS) conference, the topic of MS and sex came up. It was discussed for about 23 seconds. Later on, a well-known neurologist pulled me aside. He quietly said, “Melissa, do MS patients really care about sex?” I wanted to turn those 23 seconds at the conference into a 23-hour teaching experience right then. Instead, I simply replied, “Yes…and intimacy.”

I understand the conflict in his question. Sex, intimacy, and MS may seem like opposites, like sweet and sour. Research has shown people with MS care deeply about enhancing and regaining their sexual function. They want to bring feelings of intimacy back into their lives. And so do their partners.

For many, MS may be linked to physical and emotional pain. MS may also lead to isolation and distance between people. As MS progresses, it may also produce a diminished sex drive, a change in body image, and a change in roles in a relationship. The independent breadwinner and care partner may suddenly be dependent upon the care of another. Being diagnosed with MS doesn’t make people very happy—let alone put people in the mood to be intimate. Keep in mind that everyone’s MS is different. Be sure to speak with your doctor about questions regarding intimacy.

Sexual impairment may be attributed to symptoms associated with MS. These include impaired sensation, pain, fatigue, spasticity, bladder and bowel issues, tingling, concentration, and symptoms related to mood.

Psychosocial factors may also affect people’s ability to experience a gratifying sex life and meaningful relationships. For instance, poor body image, low self-esteem, feelings such as self-consciousness, embarrassment, fear, loss, and mood disorders.

According to the National Multiple Sclerosis Society, 91% of men and 72% of women with MS reported that they were affected by sexual problems. In another recent study, 63% of people with MS reported their sexual activity had been affected.

While sexual problems can be common in any relationship, these statistics are very telling of what people living with MS are going through. People are often reluctant to discuss the subject with their partners or healthcare professionals. This can be due to fear or embarrassment.

Both men and women should discuss any sexual problems with a doctor, and discuss whether medications may be helpful.

There are profound differences between sex, intimacy, and sexual intimacy:

• Sex typically involves a physical relationship between two people
• Feelings of intimacy go beyond physical contact and even words. It can be a private and personal moment of connecting with your own feelings or another person. Intimacy is often impossible to describe. It’s different for everybody. Some of the most powerful moments of intimacy may happen outside of the bedroom
• Sexual intimacy is a blending of the above

However, there is no perfect recipe. For intimate relationships to be sexual and sexual relationships to become intimate, relaxation is key. It makes you realize you can still experience pleasure in your life. And know that your gift for connecting deeply with another person has not been lost.

Both the body and the mind play a role in intimacy and sex. If MS feels like a third wheel in your relationship, here are 6 tips to consider:

Set a goal of bringing sexuality and intimacy back into your life. Facing the challenges of MS with your partner can actually help bring relationships closer together.

Communication goes beyond talking. It involves creating an environment where you and your partner can feel safe and comfortable speaking with each other. Timing, location, and listening to each other are all key in creating an environment where you and your partner feel valued, understood, and open with each other.

If you are telling your partner about your MS diagnosis for the first time, talk to your partner well in advance of any kind of physical encounter. Allow time for thoughts and feelings to be discussed.

Whether you’ve been married for 40 years or are starting a new relationship, sharing your thoughts and feelings with someone you trust is vital. That could be your partner, friend, neurologist, therapist, or nurse. If you’re not comfortable talking to someone close to you, check out an MS chat room. 

Don’t judge yourself during moments of insecurity. Recognize that “no good” ever comes from focusing on the negative. In fact, your critical self may produce more harm than good.

Don’t use words like “should,” “shouldn’t,” “good,” and “bad.” Keep a positive attitude. Avoid criticizing, judging, and second-guessing yourself or your partner. There is no right or wrong in the world of feelings.

You may be anxious about your body and how your abilities have changed. You are not alone. Almost everyone is self-conscious about aspects of their body. Don’t dwell on how things used to be. Try to embrace how you’re beautiful now.

Not much can be done without planning. This includes moments of intimacy. Organize your time and environment around your personal medical and prescriptive needs. Recognize the times of day when you are at your best. Let the excitement of connecting with a partner be a joyous part of your “plan.”

You might think of something that can be infectious as having an isolating effect. But when it comes to intimacy, laughter can connect people and strengthen relationships.

Laughter and humor can help keep a positive mindset. Try to laugh often. Not only is it the best medicine, it’s free!

My grandmother used to say: “Good things come to those who wait.” “Rome wasn’t built in a day.” “Where’s the fire?” She must have known I’d be writing an article someday about sex, intimacy, and MS. It’s essential to avoid “clocking in” and “clocking out” of the process of connecting with another. Intimacy is a deeply personal experience. It can change as your body and feelings develop.

Intimate feelings with another person may be important to your quality of life, so take your time. As my grandma said, “Slow and steady wins the race.”

When navigating intimacy and MS, the goal is to explore a new or forgotten part of your life. The main aim is to create “empathetic attunement.” This is a humanistic connection between you and another person where trust and intimacy can continue to grow.