For men and women living with MS, sexual intimacy can often be a challenge in many different ways. For women, the issues are frequently emotional, whilefor men, they can sometimes be physical - but that’s a whole other blog post!
When I was first diagnosed with MS, I was in my early thirties and had a brand new baby at home. I was working two jobs, not sleeping, and most of my “free” time was spent relapsing. My life was simply too much for my MS to handle, and my husband and I were both just trying to survive. I’m sure we had sex at some point, we just don’t remember it because that’s how exhausted we were.
As our children grew and stopped needing us so much, my MS grew with them. My husband has had to do so much to keep our family (and me) together through the years that many rave about how awesome he is for not leaving me. Thanks, but in my mind that is not a compliment. There was a time in our marriage when he was diagnosed with cancer and I was his caretaker. In my mind, it was a blessing for me to be able to be there and take care of him. While he couldn’t speak, I knew him so well that I could tell exactly what he wanted, and made sure he got it. Because of that, we both get a little miffed when he is congratulated for not taking off on me. There is sexism in sickness, after all.
Why do I bring that up when we are talking about sex, you ask? For me and many of my girlfriends with MS, it’s okay if we can’t physically feel everything during sex. We still can have an awesome sex life if we FEEL that we are wanted, loved, appreciated and sexy. Not necessarily in that order, but a comment like, “Wow, I can’t believe he didn’t leave you!” doesn’t make anyone feel warm and fuzzy. Instead, those words only added to the guilt that I was already feeling. I felt unworthy of my husband’s love because he had to do so much for me, and I felt like my sickness was always bringing him down. I’d retreat to my room earlier than him because my body conks out before his. When he did make it to bed, I’d already have at least three layers of PJ’s on and I’d have my back to him. He took this as a sign I didn’t want to, and I was thankful. It became almost like a sickness in itself.
When you’re constantly retreating, you become shy and isolated. At this point, I became terrified to have sex. It started as guilt and then it turned into a fear; I was hiding from my own husband. I didn’t want to see myself naked. I felt so ugly that I wouldn’t even let people look in me in the face during conversation. Eventually, I broke down to my doctor about it and shared that I no longer was the outgoing person that I used to be.
After struggling with these feelings for a while, suddenly everything changed when my husband’s illness started to return one night far away from home. It just so happened that I had decided to surprise him and was staying in the hotel with him. It was a terrifying experience but it definitely brought us closer together as a couple. The next day he had to attend a televised event for work and pretend that nothing had happened. With cameras and people everywhere, he wouldn’t walk into the venue without me next to him holding his hand. That was a game changer for me because I never realized how much he needed me, too. I remember that after the event was over, he kept texting me how much he loved me and he thanked me for doing what I did. He said that without me, he wouldn’t have calmed down enough to do his job. The second that he got home, he took off my clothes with the lights on. I didn’t feel fear or guilt or shame, instead I felt insanely wanted and loved.
Now, I initiate sex because I don’t want to fall into isolation mode again. I am back to doing the things I did before MS. I flirt with him; I let him see me naked, whether I’m changing or showering, and it’s definitely been healthy for our sex life. It works the other way around as well. It’s important to remember that sex is good for you. For a woman, it is known to minimize pain, create sounder sleep, ward off colds, and improve bladder control. It also burns calories, gets the blood flowing in places you may be losing feeling, helps menstrual pain and boosts confidence!
If you feel guilt or shame for being sick or if you feel “badly” for your partner, I encourage you with everything I have, to talk to them, to stop those feelings, and to step out of your comfort zone. Take your clothes off because you love your partner and you want to express it. Don’t put yourself down in a way that stops you from showing love to the greatest person in your life. I promise it will be worth it!