I’ve been reluctant to write about sex and MS because whenever I include words like ‘boobs’ or even ‘high heels’ in my posts, I get spam from Russian porn sites, and creepers from wherever creepers live (Alberta?). Plus, my parents are alive and they tell everyone at church how great this blog is. And anyway, if you have MS, you already know that sex can be complicated. Unless you don’t. In which case, you might be beating yourself up over something that isn’t actually your fault. And that seems like a good enough reason to write about this *ahem touchy subject even though we have a family baptism coming up, and I’m gonna have to look all those church people in the eye (Wassup, St Matty’s).
I’d read about the possibility of MS messing with my mojo in a pamphlet when I was first diagnosed at 22, and once I was married in the eyes of God (cough), I experienced a handful of the symptoms that are collectively known as sexual dysfunction (SD) first hand. It was scary and confusing and frustrating. Though SD is extremely common in MS, most patients never discuss it with their neuros (R-Dogg would literally faint); or, I should say, most neuros never discuss it with their patients, because the onus should really be on them.
Sex with MS
The first few times my elevated body temperature and physical exertion left me incapacitated after intercourse, I think The Banker thought he was the man; like, what kind of super-hero love-making skills does it take to render your girlfriend (he means wife) temporarily paralyzed and literally seeing double?
As I would later find out, MS can do a lot more than turn your post-coital (ew) legs into spaghetti while you try to cool down and focus on how many fingers you actually have. According to every edition of Cosmo I ever read, the brain is the most powerful sex-organ. Which isn’t particularly helpful news for those of with brain damage. Like, duh. We know. That’s the problem. The brain is in charge, and if you have MS, this complicated organ can come for your sex life from three directions. Here’s the skinny:
Demyelinated nerves can directly impair sexual function by causing diminished sex-drive, decreased lubrication, problems with orgasm, and erectile dysfunction.
MS is literally a boner-killer. Medically speaking.
Before you say Netflix and no thanks, know that there are some ways you can outsmart your brain and manage these symptoms.
A low sex-drive can be caused by MS, but certain meds can interfere as well. Talk to your doctor to see if your prescriptions are possible culprits and if a medication change is possible. Low levels of testosterone are more common in MS, and can contribute to feeling over it, so consider getting your T tested. This goes for women as well.
You don’t have to want to do it. You just have to want to want to. Then figure out what gets you there. I’m not gonna tell you to turn off all the lights and drink a bottle of Arbor Mist. You do you.
Seems obvious, but get yourself a proper water-based lubricant. Then use lots of it. Do it on your partner’s side of the bed.
Problems with orgasm
I’m not particularly into Spoon Theory (technically it’s a metaphor); but if I were, I’d tell you that sex costs all of today’s spoons and some of tomorrow’s. And anyway, energy reserves should be measured in batteries. And speaking of batteries, get yourself something with batteries. Powerful ones.
Dudes, if you haven’t heard (seriously?) there are highly effective medications to manage your man-stick, and you don’t have to wait until you’re going grey to get them. So like, get them.
The secondary symptoms that further try to cancel your sex life, are the symptoms that aren’t directly related to sexual function but definitely get in the way of it. Like, it’s hard to be in the mood when you’re dealing with bladder and bowel dysfunction, pain, fatigue, spasticity, weakness, and 17 other things I’ve over-looked. Communication is great, but it isn’t always easy to say:
“Not tonight, honey. I can’t trust my bowel RN.”
When you’re dealing with any combination of these symptoms (because really, who has just one?), sex can feel like yet another thing you have to do while you’re struggling just to get through your day. And, of all these symptoms, fatigue might be the joy-sucking Dementor-In-Chief.
Oh, you wanna do it? Okay, but do you also wanna make dinner? Finish the laundry? Clean the bathroom and everything else I was gonna do tonight?
Just kidding. I was gonna do none of those things (scroll through Insta, drink wine from the bottle, sleep in the shirt I wore all day). The point is:
Sex tricks the chronic illness brain. You see a bed and your brain is like, Oh yeah, I wanna lay down. Ooh, are these flannel sheets? Sure, I’ll have a glass of wine. How relaxing. Then suddenly someone expects you to do stuff. And that stuff is suspiciously like exercise.
This was not supposed to be a place of exercise.
But, just like exercise and the surprised feeling I have every single time I don’t wanna do it but then I’m glad I did ‘cause afterwards I feel awesome, the feeling only lasts until I try to bend my legs. Or stand up. Or make it to the bathroom before a UTI sets in.
What you can do about secondary symptoms
Secondary symptoms need to be addressed regardless of their impact on your sex-life. There are medication and lifestyle modifications that can improve things. The following strategies are add-ons to an existing MS management plan. As always, not medical advice.
I try to take an extra dose of my spasticity medication before the main event, but always talk to your doctor. Try stretching; or better yet, get your partner to help you stretch. Too medical? I don’t know. Guys; I don’t write for Cosmo.
Remind your partner about spots that are painful or sensitive to the touch. And then remind them again.
If you’re stressed about the state of your bowel or bladder you are not gonna have a good time. A sense of chill is important. The Banker is used to hearing, “Can you hang on a sec, I have to pee”, and he will take what he can get. But this might be trickier to navigate in new or casual hook-ups. Do it when you feel safe.
Cosmo didn’t cover this (note: I did not verify this); so, talk to your doctor, or just do what I do, and let your partner do all the work. If this seems selfish, it’s because I am.
Hacking your sex-life with MS may mean the death of spontaneity; but like, get over it. Like most things with MS, sex takes planning. Put it in the calendar, and budget your energy accordingly. Maybe don’t hit the gym and the hay on the same day. Sex should totally count as physio anyway. Make a plan, but agree on an exit strategy. MS can turn on a dime, and it can be comforting to have an agreed-upon, no-blame, safe-word pact that lets you opt out without having to explain away pain, fatigue, or a sketchy bowel. Just say ‘banana’, and write a rain-cheque.
MS can lead to depression and anxiety, even low self-esteem. MS can change how you feel about your body. There may be times when you don’t even recognize yourself. I’ve sometimes felt like so much has been taken from this body, it’s hard to imagine it has anything left to give, and in my darkest moments that someone else should want it.
Internalized ableism would have us believe that people with disabilities don’t need, want, or, worst of all deserve to have a healthy sex life. We don’t have enough (any?) sexy role models who happen to have disabilities; so we can hardly be blamed for struggling to recognize our own desirability.
Partners of people with MS have admitted to feeling confused by invisible symptoms. They may blame themselves for a lack of bedroom action. They may feel rejected, believing that your pass at passion means you’re no longer into them. They might feel guilt for wanting you so bad when they know how expensive sex is for you. Maybe they’re afraid to bring it up.
And maybe you feel for them. And maybe you don’t. Because, as if the list wasn’t already long enough, now you have to manage the emotions of someone else. You find yourself re-assuring them:
It’s not you. It’s me.
Which is bullshit of course. And a lousy thing to tell yourself. It’s not you, it’s MS. And you are not your MS.
What you can do about tertiary symptoms
Address and treat depression and/or anxiety. Not just for the sake of your sex-life, but for your overall well-being.
Do what you need to remind yourself of who you are, and to feel a little more desirable. It can be hard to feel sexy when you haven’t showered since the solstice, and you don’t want anyone to smell your hair. Spiffing up can add to fatigue, but even I can admit there’s something energizing about smelling like not dirt. Being the version of you that feels the most welcoming doesn’t have to happen every day. Budget accordingly.
Sex can make any of us vulnerable. While you’re worried that a mobility aid has you looking more feeble than fetching, your partner definitely has their own weird issue, like a third nipple they’re terrified you’ll discover. If you’re having trouble finding style role models, check out hashtags like #babeswithmobilityaids. It’s not just me posing with cute rollators. There are people with varying degrees of disability putting themselves out there to help change the narrative about what it means to be fab.
What your partner can do
Partners, know that we want to be the sex-machines you deserve. Managing any or all of these symptoms is exhausting and overwhelming. You can help hack this. In fact, you must. The effort to keep the flame alive can’t be one-sided.
Don’t give up on sex with MS
Loneliness is a major problem in MS; one that can literally shorten lives. Doing what you can to stay connected is as important as any medicine you could take.
It’s normal to grieve what you’re going through. Cosmo promised me my sexual peak was at 30, and the universe gave me MS 8 years earlier. It’s not fair, and freaking out is entirely justifiable. But grieve and get on with it. You don’t have to let sex become another casualty of this disease.
Stay sexy, Trippers.
Update: I just googled Cosmo, really to see if it still exists (I read VF now, because I’m an adult). Anyway, it does. And let’s just say, it’s way more…thorough? than I remember. There’s a whole section on interabled couples, with some very NSFW images. Go and be inspired. Nice job, Cosmo (things I thought I’d never say).
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