Multiple sclerosis (MS) is the most common progressive neurological condition among young adults, often striking people in their 20s or 30s. Although there’s still a ton that we don’t know about the condition, most experts believe it is an autoimmune disorder in which the body attacks its own myelin sheathing, the protective covering around nerves. As these attacks interfere with communications between the brain and the rest of the body, the condition can cause a host of wide-ranging effects. These often include blurred vision, dizziness and balance issues, focus and memory problems, muscle weakness, and random points of numbness or pain. But they can also include things like hearing issues, paralysis, and dozens of other potential symptoms.
No two cases of MS are exactly the same. One person may only get a few low-level symptoms initially, which will hold relatively steady throughout their life, while another may progressively develop more and more extreme symptoms throughout their life. Some people’s symptoms are constant, while others remit and relapse. But despite all this variability, the vast majority of people with MS report that the condition leads to serious complications in their sex life, often from its outset.
Some of these complications are the result of interruptions to the flow of sexual signals from the brain to the body and back, affecting sexual drive, arousal, and sensation, or directly interfering with things like vaginal muscle contractions or penile ejaculation. Some flow from MS’s wider effects: Muscle weakness and spasms may, for instance, make it harder to get into or hold some positions during sex. Bladder control issues may lead to accidents mid-session, which can take people out of the moment. Constant fatigue and pain throughout the body can also kill a person’s libido entirely. People with MS also often experience anxiety, depression, and body issues as they deal with their symptoms, others’ reactions to them, and the condition’s unpredictable course, which can exacerbate existing MS-related, or create all-new sexual function issues.
Although there is no cure for MS, experts and individuals can work together to find effective means of managing their symptoms, and even treatments that can curb the condition’s course in many cases. However, people with MS and researchers and experts alike note that both medical care providers and patients often don’t bring up, or aren’t prepared to talk about, sexual issues when tackling MS, which makes it hard to find solutions, or to align an overall care regimen with an individual’s sexual needs. Academics have called for more study on and medical training in the sexual effects of MS, and a number of MS organizations have started to fill this gap in recent years by publishing highly detailed guides on how to approach sex with the condition. But few people with MS have candidly and publicly shared their experiences with sex.
In an effort to help address this gap, VICE spoke to Celeste, a woman with MS, and her partner Quinn about how they’ve approached sex alongside this condition throughout their relationship.
This interview has been edited for length and clarity. Celeste and Quinn’s names have been changed to protect their privacy.
Celeste: As most people with MS would probably tell you, I think my symptoms started way before I got diagnosed. In 2014, while I was still in college, my vision went downhill over a month—but not consistently. At some points, it was blurry, but at other points, it was fine. I figured it was just a result of being stressed about school, or that it was just my time to get glasses, because most people in my family have them. But when I got glasses, they didn’t fix anything. After that, a slow progression of weird little things started happening to me, here and there, on and off. Like, I had migraines every three days or so for a year. Or, I had this weird brain-tingling sensation, and then for like five seconds everything around me sounded like gibberish. But I passed it all off as just me getting older.
In late 2016, I started developing a rolling wave of new symptoms: Brain fog; the “MS hug,” which is a feeling of tightness around your chest and ribcage; dizziness, balance problems, and issues with my gait; extreme anxiety; and pain, mainly in my feet. So, I finally talked to my doctors about all of this, and they said I might have MS. Even before I got my official diagnosis in 2017, I was convinced that was the case, because when I read up on it, everything fit. When a neurologist finally gave me my results, I cried because I just felt so relieved to finally have a name for what I was experiencing, options for symptom treatment, and answers to my questions.
Pretty soon after that, I was lying in bed with my then-partner, who I’d been with for six years, wondering how MS might be affecting our sex life: I’d started to develop numbness all over, including in my genitals. I felt pain during penetrative sex. I was always fatigued. My muscles and joints constantly felt sore, like I’d just worked out too hard. It was making sex unenjoyable.
It’s hard to figure out how much of that is tied to MS as opposed to other potential causes. I was raped in a previous relationship and at that point had not addressed the psychological effects of that, mostly because I was in denial about it. That led me to feel a lot of anxiety around sex, and to push my partner away sometimes, or not to enjoy sex many times when I did have it. So, was my low libido and pain during sex related mainly to that, or to my MS, or to both?
Some things were clear, though: My MS hug was really intense, like wearing a corset all the time and having my chest slowly crushed, which made it hard to feel sexual or focus on sex. And my diagnosis opened me up to the possibility of seeking professional help for my sexual issues—which I did because I wanted to get back to enjoying sex again, like I knew I could.
But even though I found some things that helped, like pelvic floor exercises for relaxation, my partner at the time stopped initiating sex with me, because he felt like my low libido and issues getting into sex meant that he was unattractive, unappreciated, and unloved. For four years, it was really just me trying to initiate sex, even though I was still dealing with anxiety and other issues, and maintain our intimate relationship. I really felt alone. That relationship ended mainly because of our sexual issues in early 2020. A few months later, I reconnected with Quinn.
Quinn: We were best friends towards the end of high school, but we’d fallen out of touch as adults, like people do sometimes. I still followed Celeste on Facebook, though, and I saw her posting about some health issues. I wasn’t sure exactly what was going on, and later I felt bad for not asking any questions then. But at the time, I didn’t want to interrupt her life like that. When we reconnected, at first as friends but later romantically, Celeste just explained early on what was up with her health, including the fact that she might need a wheelchair because of MS in the future, among other possibilities. And I started to do a lot of research on my own to develop a better understanding. I asked her a lot of questions from the start … like, “Is it contagious?”
Celeste: [Laughs] He sent me this whole list of questions about MS at one point. I actually thought that was pretty cute. It showed he was taking an active interest in my life, and in what has really become a big part of my identity. I felt really seen by his active interest.
I’d been thinking about the possibility of ending up in a wheelchair specifically right before we got together. I stressed that possibility because I wanted Quinn to be fully aware of what could come up later in life; I think it’s only fair for someone that could be a part of my life long-term to understand that. And if a potential partner can’t accept that, they’re not really worth my time.
Quinn: When we got physically intimate, MS wasn’t really an issue, because Celeste has periods of time where she doesn’t have many symptoms, and that was one of those times. Then, at some point a few weeks later, I started noticing she was less interested in sex, or seemed uncomfortable at times. I knew about her issues in her last relationship. I’d been married before we got together, and my ex and I had sexual issues, mostly because of tensions between us; it wasn’t a healthy relationship. So, when these issues started coming up with Celeste, I started replaying experiences from my last relationship in my head and thinking that I must be doing something wrong, or that something must be wrong with us.
Celeste: In the beginning of our relationship, I was open about my MS in general, but I wouldn’t voice my thoughts or needs during sex, especially—partially because I’m the kind of person who, once I start something, I want to finish it no matter how anxious or pained I feel. So, I’d just keep going, clearly uncomfortable, just trying to hurry things up.
When we first started having these issues, I honestly didn’t know if our relationship would make it, because those first conversations about these kinds of things can be so delicate. It’s so easy to accidentally say something that hurts the other person.
Quinn: But Celeste was just open outside of sex about what was happening, and I kept doing my own research about MS, until finally I started to accept that this was what was going on. It also helps me get through those insecurities when she compliments me on what she likes during sex.
Celeste: Yeah, I mean, I like to complement things that I love during sex, not just point out problems! It’s helped me that Quinn is really good at reading my expressions and body language, and if he sees that I’m anxious or in pain he’ll stop things so we can figure out what’s going on and what we want to do. Eventually, I realized that staying quiet was just hurting me, because I’d just tense up more and more, and it was keeping me from my goal of good sex.
We communicate a lot now. I tell Quinn whenever I’m not feeling up to sex, or I can’t feel something we’re doing because of MS numbness during sex, or I feel too much pain. (I know this doesn’t sound good, but I’ve gotten so used to some pain all the time with MS that I usually just go with the flow during sex unless it’s really bad.) When I’m not up to sex, we just cuddle a lot, and I love that. When there’s an issue during sex, we just stop and change positions, speed, or intensity, until we find something that I can feel and that feels good. We recently tried a new position—a 69 with him on top and me on the bottom, which was really nice for me.
Quinn: Yeah, I’m constantly trying to come up with new positions that won’t require too much energy from Celeste, because I know that fatigue can be one of the big barriers to sex for her.
Celeste: I appreciate lying down, letting him do all the work, and it being amazing for both of us. But it really is an ongoing process of experimentation and figuring things out. Which all comes back to the work we did early on figuring out how to communicate about our needs.
Speaking of communication, I don’t get any pain with oral sex. That just feels amazing. But I still can’t feel it sometimes because of numbness issues. So, I’m still trying to figure out how to name specific things Quinn does during oral sex that work really well for my sensation issues, so that I can really pinpoint specifically what I want in the moment to make it even more amazing.
I used to think of myself as very timid. This experience of learning how to navigate MS and the sexual issues related to it, and how to communicate everything I learn in that process to Quinn, has made me feel like a new person. I feel more sexual autonomy, and less stress.
Quinn: I have been thinking a bit recently about what symptoms might develop later on that might affect our sex life, and how we’ll deal with them if and when they do come up.
Celeste: That’s a good question, because MS things can change a lot. But the fact that we’re so open about all of these things will help us deal with anything in the future.
Quinn: I think so, too.