When my partner and I got together in our 20s, sex was our best thing. We had compatible philosophies of life. Neither of us was much interested in money or in owning a home, but sex was the main interest we had in common. We spent a lot of time and energy on loving.
Then, 15 years later, I had a big multiple sclerosis (MS) relapse. I was diagnosed and suddenly I didn’t feel so sexy anymore. After the relapse went into remission, I became secondary progressive, meaning my body gradually lost bits of function one after the other. I became a little weaker and less mobile each year.
Although I still wanted sex, I wasn’t sure I could still have it. Would my wife or anybody else still see me as attractive? Without sex to connect us, what would hold our relationship together? By this time, we had two children, aged 8 and 10, so we weren’t going to split up. Still, our life would be much less enjoyable, and our relationship wouldn’t be nearly so intimate.
Real life didn’t turn out nearly as bad as I had imagined. Like every other challenge MS brings, maintaining sex and intimacy required me (us) to adapt how we did things, accept some losses, and move on. Here are some of the problems that have come up and the fixes we read about, were taught, or made up for ourselves. I realize I’m coming from a male, heterosexual perspective, but I think a lot of these ideas could be useful for anyone.
● Loss of energy: Sometimes, I was attracted but just didn’t feel up to it. We learned that we often had to schedule sex for times when I had more energy, often in the morning, and not after doing hours of housework or a day of errands.
When I taught workshops on sex and MS, someone would usually say, “But spontaneous sex is so much hotter.” I would reply, “Spontaneous sex is how you get pregnant. Planning lovemaking could make it better or at least more comfortable.” You have to make time in your life for love, even if it’s not very often.
● MS symptoms like numbness, spasticity (stiffness or tremors), and pain can interfere with sexuality. Who wants sex when they are hurting? Sometimes medications can help with these symptoms. Cannabis has been a big help for me, relaxing stiff muscles, reducing pain, and increasing sensation.
There are forms of cannabis, such as CBD, that do not make you high. If cannabis is not available to you, ask your doctor about other medications.
● Mobility issues: A person with MS may not be able to climb on top of somebody else, stretch their legs wide, or bend into sexy positions. However, there are always positions and activities we can do. For me, like with many MSers, passive positions are best: lying on my back or on my side.
● Loss of bladder control can turn off a lovemaking session. Only thing I know for that is to cath or urinate as completely as you can before starting to be romantic. If possible, you might want to move your bowels, too.
● Role confusion: If one’s partner becomes one’s caregiver, it might be difficult for them to switch to being your lover. It might also be hard for you to feel like a lover. Getting some care from others or doing more for ourselves can help, as can couples counseling.
● Loss of sexual function: After 15 years or so, erections started to become more difficult for me to get or maintain. This is typical of MS. According to the Cleveland Clinic, 40% to 80% of women and 50% to 90% of men with MS experience sexual dysfunctions, including loss of erections, of lubrication, or orgasm.
Most of these problems can be treated. They may be directly caused by MS nerve damage, or by our medications, or by psychological side effects such as depression and feeling unattractive. Psychotherapy or medication changes can help. If numbness blocks pleasure, some people just need more vigorous stimulation.
In my case, having sex with limited erections turned out to be a lot of fun. I learned new creative ways to use my hands, mouth, and occasionally other parts to give women more intense pleasure than intercourse seemed to provide. I became an authority on non-intercourse sex, writing and speaking about it to audiences of people with chronic illness and to sex therapists. That stuff really works. A Google search for non-intercourse sex will give you dozens of options.
I didn’t completely give up on erections and found that drugs like Viagra made them possible for a while. There are more invasive medical approaches to erectile dysfunction, but I avoided them. I had ways we liked better. So things were OK with us sexually for 20 years or so.
● Loss of desire: When both partners lose libido (sexual desire), it’s not much of a problem. Just do other things. But when one person (usually but not always the one with MS) loses interest and the other doesn’t, it’s hard on the partner who still wants it. Then, you have a few choices.
Try to restore your desire: If low libido is caused by your medications, you can change them. Ask your doctor. Psychotherapy and couples counseling might resolve mental blocks to sexuality.
Sexual behaviors such as “body mapping,” which means going over your whole body with different kinds of touch to find places that turn you on, might restore some desire. Sometimes people can renew their desire by just acting sexier with each other – flirting and touching.
Some couples choose a lifestyle change. The partner who still needs sex can be free to get it outside the relationship; if it doesn’t compromise their feelings toward the nonsexual one. This option is challenging, but it has allowed us to maintain our closeness.
You may feel differently about sharing, and there are other options you can talk to a doctor about or explore online. It’s great to keep sex in your life if you can. Getting turned on is a nice feeling; so is feeling close to someone and feeling loved.
MS does not take those things away from you; it just makes them a little more challenging. I look at it like, “I had 30 good sex years with MS, and I can let go of it now.” But maybe I will get back to it someday.
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
Photo Credit: Meng Yiren / Moment via Getty Images
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