I’ve sat on this post literally for years due to the sensitive and personal subject matter. It appears that relatively little has been discussed regarding this issue, and for good reason—I (thankfully) don’t know of too many people who want to openly discuss their sexual life. Nonetheless, this topic has become more and more of a pressing issue for me as time has gone on, and in the spirit of openness and honesty with regard to living with multiple sclerosis, I feel it’s important to discuss.
It’s common knowledge that sexual dysfunction is a common symptom of MS. For me, it became an issue almost immediately following my first exacerbation. I was in a monogamous dating relationship at the time of my diagnosis. Within months of recovery from the exacerbation, I noticed things felt different during sex. At first the change was solely physical. It suddenly took a VERY long time to achieve orgasm—so long that I became frustrated and more often than not gave up trying. Vaginal dryness also became more of an issue than it had ever been. Everything in the genital area seemed over-sensitive, and not necessarily in a good way; more like in an “overstimulation” way. Sex was quickly becoming unenjoyable.
As time went on, equaling and then surpassing the physical issues was (and has been ever since) my lack of libido. I believe the reason for that to be twofold: partially (minimally) due to the physical difficulty—when sex ceased to be physically enjoyable and seem like “work”, naturally it follows that I’d want to bother with it less. Much more so, the lack of libido is neurological. I don’t claim to know the exact mechanism by which this happens, but it does and it happens to a LOT of us—as neural pathways are disrupted by demyelination, anything can be affected, including how the brain signals one to desire sex. In my case, it began to signal me to desire it almost never-not-ever.
In 2012 my ex-husband and I reconnected and began a new relationship. I made him aware of all of my experiences thus far with MS, including my limited sexual desire. Of course I did my best to assure him that “it’s not you, it’s me”—that famous line—and that it had absolutely nothing to do with how attractive I found him or how much I loved him. We have had many a sexual drought in our young (re)relationship, and each time I am simultaneously grateful that he’s so understanding and pensively mindful of the fact that our relationship isn’t exactly “normal” (whatever THAT is). Because, I don’t force myself to have sex. We have had discussions about that very issue—how occasionally I would do that, in an attempt to be a “good wife”, to not “deprive” him, to make sure he doesn’t feel “rejected”—all of those “should”s and “should not”s that go along with sex in a 21st century relationship—and he made sure to tell me that he was not interested in “duty sex” and to NOT at all have sex if I wasn’t in the mood. When I countered that my “in the mood” is actually almost NEVER, his response was basically, “so be it.”
This is VERY difficult. In this area, I often feel like a failure as a woman and a wife. It was hard enough to feel like my sexuality was basically taken away without my consent. But then to know that, despite his calm attitude about it, my husband has to be affected through no fault or doing of his own, adds insult to injury. It’s not fair to either of us, but I hate having this burden put upon him, whether or not he sees it as such.
When I spoke to my neurologist about it, probably a couple of years ago now at least, he advised that there were medications he could prescribe to give my libido a boost. I’m not taking a pill to have sex, I thought—and probably said, knowing me. I still feel that way. Something about that just seems ridiculous, unnecessary, and even wrong. I can’t put my finger exactly on why, but I think it has to do with my notion that if something as intimate and personal as sex can’t be done “naturally,” then it doesn’t need to be done. I’m not one who believes sex is a “need”, physical or otherwise, although I know that attitude is probably product of a chicken-or-egg argument; do I not care about sex because I feel that way, or do I feel that way because I don’t care about sex?
There’s no doubt that our emotional intimacy has suffered right along with our physical intimacy. I’m very fortunate in that my husband and I are very good friends—but on my bad days when I think about it, in many ways that’s ALL we are. I very rarely feel like we’re lovers. On the worst days, I feel like we’re just good buddies and roommates. I don’t WANT to feel this way. We were only married two and a half years the first time before we divorced and we’ve not even been married two years yet this second time. God willing, we have another 30-40 years together, and I would rather not spend it without any passion or even a few embers. I absolutely would rather not spend it without romantic love that I do believe is built and sustained with physical intimacy.
We have a four-month-old—obviously we’ve had sex in the past year, and not just the time we conceived her either. We have, though, been celibate since probably a month or two before she was born. And while I vaguely consider resuming our sex life from time to time (a commitment to natural family planning makes that tricky considering I haven’t resumed my menstrual cycle), it’s been a passing thought—“oh, yeah, we should probably have sex” (there’s that “should” again!)—rather than an actual desire to put into action.
If you or someone you love has been affected by MS and sexual dysfunction, what are your experiences? What have you done to work around the problem? DO you consider it a “problem”? How have you maintained your intimate relationship with your partner?