Ardra:
I'm Ardra Shephard and this is Tripping on Air, a place to talk shit about what it's like to have MS. Normally I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar, my friend whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you.

Ardra:
brain is the most powerful sex organ in the human body, which is kind of the problem if you have MS. After all, MS is a disease of the brain and spinal cord, which means MS can mess with your mojo. The good news is there are things you can do to get your groove back. Before you say Netflix and no thanks, hear me out. On this episode of the Tripping on Air podcast. We are talking about all the ways MS can impact and impede sexual function as well as what you can do to manage symptoms and keep MS out of the bedroom.

Alex Hajjar:
This is such a great topic. Sex and MS comes up frequently on the forums and support groups that I take part in.

Ardra:
I'm sure it does. And it's not really talked about. I mean, the first I heard about sexual dysfunction in MS was one bullet in a pamphlet that I got when I was first diagnosed, and it was scary and not at all helpful.

Alex Hajjar:
Well, how common is this symptom in MS?

Ardra:
I mean, it's not exactly one symptom. Sexual dysfunction, I guess maybe we can also call it SD for short if it's a mouthful. It's more of an umbrella term and the stats are pretty big. So something like 40 to 80% of people with MS experienced this, which is what I came up with when I was doing some research, and I feel like 40 to 80%, that feels like such a made up number. It makes me think we're either not counting it properly or it's not being discussed. I don't know how many neurologists actually are asking their patients about this.

Alex Hajjar:
Is that a big number? I mean, I'm coming at it from a totally, I don't know what I'm talking about view. Is that a big number or a small number? Is that why it's confusing?

Ardra:
I mean 40 to 80% of people, I feel like it's a big number, right? There's a big difference between 40 and 80%. I feel like we're going to talk about all the ways that it can impact you, and so chances are, there's maybe some little something that's impacting you. Does that make sense?

Alex Hajjar:
True. Yeah, I think so. It is kind of a wide berth, right? So it makes sense that it's vague. I read an article that you wrote about sex and MS, and I think it'd be good to link it in the show notes, because there's a lot of great information there. But you describe the impact of MS on your sex life as coming from three different directions. Can you explain that?

Ardra:
Let's clarify. I explain the impact of MS on sexual function in general as coming from the three directions. So anyone with MS may experience one or some or all of these symptoms. This isn't about me specifically, but more about the MS experience in general. But you're right, yes. And if we look at what happens, you can break it down into primary, secondary and tertiary symptoms of sexual dysfunction. So it's not the same as MS phenotypes like primary and secondary progressive MS. Primary symptoms have a direct impact on sexual function, the mechanics, whereas secondary symptoms don't technically stop you from having sex, but they can make things more challenging or uncomfortable or unpleasant. Tertiary symptoms include the broader emotional and social impact of living with MS. And it sounds complicated, because it is, but we're going to break it down. Because as I like to say, what gets measured gets managed.

Alex Hajjar:
That's a good thing to say actually. But there are things that we can do, right?

Ardra:
Absolutely. And I think a lot of us might think that a healthy sex life is a nice to have in comparison to being able to walk or being able to see these other things that MS can do to us, but this is a medical issue and it should be treated as such. It should be taken seriously.

Alex Hajjar:
Would you say that doctors don't take it seriously, or the MS community doesn't take it seriously?

Ardra:
I don't know. I don't know if it's that it's not taken seriously or that it's one of those taboo subjects. I feel like not all neurologists are asking about bowel function or bladder function or these uncomfortable topics. They're showing you lesions on your MRI but maybe not really getting right into the symptoms. And so whose responsibility is that? It can be, I don't know. You have said that you've noticed in support groups that it's a topic that comes up. It's sensitive, it's tricky. It involves our partners.

Alex Hajjar:
Yeah. Actually, oddly enough, I saw it in a Reddit post somewhat recently and actually, well, I commented, which I probably shouldn't do most of the time on Reddit. But I started talking about this with someone who for 26 years thought they had MS and it turns out they didn't, they had something else. Anyways, but it's a symptom in a lot of things. Anyways, I think that... So if I understand this correctly, maybe-

Ardra:
So wait, they thought that they had MS because they were having difficulty with sexual function?

Alex Hajjar:
No, obviously I should have provided more nuance, but they were having sort of trouble with their sex life. I can say that I think. Or they were having challenges. And they were having symptoms of MS or whatever they had, had similar symptoms. And then somehow they found out they didn't actually have MS after 20 some years of thinking they did. It's not exclusively an MS thing is also something we can say, right?

Ardra:
Oh my god, yeah. I think if anything, it happens the other way around, that people might be having difficulty with their sex lives and they don't even consider that it might be MS, which is why I want to talk about the three categories of how MS can impact your sexual function. Because yeah, you probably can blame MS, but of course people have difficulty with sexual function for a million different reasons, and I wouldn't think, oh, I'm having trouble with my sex life, I must have MS. I would not jump to that conclusion. It's like you already have MS, and then maybe here are some issues. And maybe it will help clarify things if I start talking about the primary symptoms. So just like MS can make you lose your balance or cause drop foot, demyelinated nerves can directly impair sexual function by causing things like diminished sex drive, decreased lubrication, problems with orgasm, and erectile dysfunction. I like to say that MS is a boner-killer, medically speaking.

Alex Hajjar:
Very true. So MS itself can cause a chemically low sex drive, but I imagine certain meds can also interfere with it as well.

Ardra:
And I feel like that's a good place to start. If your sex drive is suffering, talk to your doctor or your pharmacist to see if there are medications that can be changed or swapped out. See if that's an option.

Alex Hajjar:
So if a side effect of medication is ruled out and it seems like a low sex drive is more of a primary symptom, then what is the remedy? Is there a remedy?

Ardra:
There are different approaches. We don't know why, but low levels of testosterone are more common in people with MS, and that for sure can contribute to feeling over it. So that's another place to start is to maybe get your testosterone levels tested. And that goes for men as well as for women. I'm going to put a link in the show notes because there might even be additional benefits of testosterone for people with MS. Testosterone has actually been shown to have neuroprotective and neuroregenerative properties in animal studies of MS. So that's an interesting little bit of research to keep an eye on too.

Alex Hajjar:
That's so interesting. Things like that always make me think why isn't there a cure yet if it's showing this? But that's my crazy brain kind of going off on a tangent.

Ardra:
Why isn't there a what?

Alex Hajjar:
Oh, if it's showing all this, why aren't we just taking testosterone more to kind of offset it?

Ardra:
Because some of us don't want to grow beards.

Alex Hajjar:
Yeah, I'm also like that's a very irrational part of my brain as well. It's just reacting to things. So is it fair to say though that if MS is affecting your sex drive, you don't necessarily have to want to do it, you just have to want to want to do it?

Ardra:
I think so. I feel like it's the first step and I feel like it's probably going to be a combination of solutions. If you can improve one or two or three of the symptoms that we're going to keep talking about even a little bit, I feel like all of that adds up.

Alex Hajjar:
Yeah, I guess I would agree with that. I think that the ultimate goal that you're working towards is sort of a, what is it, a sum greater than its parts. So you kind of have to put it all together so every little bit helps. I hope that makes sense.

Ardra:
That's the money ball effect, right?

Alex Hajjar:
Yeah, yeah. Snowball all the good things. It is all about the little things after a while. I think focusing on the big thing can maybe make you lose focus, so just concentrate on the baby steps. Yeah. So the other primary symptoms you mentioned were dryness, difficulty achieving orgasm, erectile dysfunction.

Ardra:
Yeah, it's a bummer, but I mean the good-ish news is that many of these primary symptoms have fairly straightforward solutions. If dryness is an issue, get yourself a proper water-based lubricant and do it on your partner's side of the bed. Budget your energy. Sex might cost all of today's spoons and some of tomorrow's. And anyway, energy should be measured in batteries, so get yourself something with batteries. There are highly effective medications to manage erectile dysfunction, and you don't have to wait until you're going gray to get them.

Alex Hajjar:
Oh my God, I'm already getting ads on the social media platforms for the little blue pill or orange pill, whatever the color, and I'm like, I'm 37, dude. But I mean, I get it. People need it, and they work apparently.

Ardra:
And forget stigma.

Alex Hajjar:
Yeah. There should be no shame in it.

Ardra:
Yeah.

Alex Hajjar:
No shame.

Ardra:
Oh my God, you're lucky to have something.

Alex Hajjar:
Yeah, exactly, right. I totally feel that. I think one thing I've noticed in some groups or chats is the stigma. I mean, it's difficult enough to get people to talk about this subject because of our society's sort of Draconian attitudes, but if you throw a dildo and some pills into the mix and it feels like you've just lit someone's bed on fire. Someone I love listening to and have loved, I guess I've listened to them for probably over 10 years now at least, is Dan Savage's Love Cast podcast was my sort of de facto sex education tool. And he introduced me to an acronym called GGG, which is good, giving and game. And in the context of being a romantic partner of someone with a chronic illness like MS, I take that to kind of be about the need for a partner to be supportive. Don't be weird about vibrators or medications. Don't make it about your ego. Say yes to stuff and communicate openly. I mean, understanding it's not an indictment of your desirability if your partner needs Viagra or a vibrator or a nap for that matter. And if you're-

Ardra:
A pre-nap, even.

Alex Hajjar:
Yeah, a pre-nap, get that cat power nap. If you're struggling, get counseling together or individually. I think that always helps. So you can kind of understand where your partner's coming from without feeling rejected or insufficient because I think that gets echoed a lot. And act as a team.

Ardra:
But did you watch Sue Johanson when you were a kid?

Alex Hajjar:
So I was more aware of her existence and I think we must have swapped. I listened a lot and read a lot of Dan Savage. I knew of Sue, but she wasn't a big huge part of my sex ed life.

Ardra:
I feel like she was kind of this curiosity maybe. She was this older woman and she was so blunt and breaking down stereotypes and stigma, and it's kind of surprising to me that even all this time later, there is still so much stigma to deal with. But we're talking about big emotions here. You mentioned something about if your partner has MS and they're struggling with these symptoms, you can't interpret that as an indictment on your desirability. It doesn't mean your partner's not into you.

Alex Hajjar:
No, not at all.

Ardra:
There's a lot going on.

Alex Hajjar:
Like, yeah, I don't know how to describe it for everyone, but I think that it's not something that you should take personally.

Ardra:
Exactly.

Alex Hajjar:
Something that MS sort of does is something that you should not take personally, but unfortunately we do. And when it comes to sex, you're right, that stigma. I think she was an oddity, Sue, who you were talking about, she was an oddity at the time because-

Ardra:
It's like your grandma, right?

Alex Hajjar:
Yeah. But she was breaking down barriers. And I feel like young people today might look back at someone like that and be like, "Oh my God, slay." You know what I mean? Or whatever the kids say these days.

Ardra:
She'd be on TikTok.

Alex Hajjar:
Yeah, she'd be on TikTok and she'd be great.

Ardra:
Totally.

Alex Hajjar:
And the same goes for Dan Savage, wouldn't exist I think without someone like that, who's constantly breaking down barriers, talking about different aspects of sex and stuff like that, and bringing it to the conversation plain and simple.

Ardra:
And also just providing really quality information. And I think that that is part of what is lacking for people with MS who are left to figure it out on their own and stumble through their relationships and all of these expectations and managing these feelings. It can be really hard. And I also want to say, if you don't have a partner, this is the time to figure out what works for you on your own so that you know what to ask for and how to communicate that. And I don't even think you need to say that you have MS necessarily if you don't want to, in a casual hookup, but it's understanding your body and where it needs more and where it needs less and managing that. So we're not just speaking to couples here.

Alex Hajjar:
No, not at all. I think if you're single, you need to learn when to set boundaries. And being single is kind of a really great time to do that because you can figure it out and definitely have a place to say no. But yes, set boundaries, communicate and keep an open mind. So we've covered some of the primary symptoms. How about the secondary ones? I think here's where it might get complicated.

Ardra:
I feel like they can be harder to treat, the secondary symptoms. So secondary definitely doesn't mean second place. But the secondary symptoms of MS that try to cancel your sex life aren't directly related to sexual function. I don't even know if directly related is the right word, but it's like the primary ones, that's MS attacking the sex organs. These are things more that get in the way. It's hard to be in the mood when you're dealing with bladder and bowel dysfunction, or pain or fatigue or spasticity or weakness or all of the above because who has just one of these symptoms? It's not easy to say, "Not tonight, honey, I can't trust my bowel right now."

Alex Hajjar:
Yes. And this is where MS becomes the punishing third wheel of the relationship. And I'd love to put up a do not disturb sign on the bedroom, but just for MS.

Ardra:
Yeah, but it's like how does that even work?

Alex Hajjar:
It doesn't.

Ardra:
Right. Yeah.

Alex Hajjar:
That's why we have this episode so we can come around with some work around hopefully for folks.

Ardra:
I feel like unlike... I mean there are a lot of symptoms, we've said it before, that MS kind of affects everyone in the house. This affects everyone in the bedroom. And I think as the person with MS, it can become that kind of feeling of you're dealing with all these symptoms, but now you have your partner and their feelings to consider, and it can sometimes feel like something else you have to do, something else you have to put on list while you're struggling just to get through your day.

Alex Hajjar:
Yeah. Yeah, absolutely. I feel like this is sort of an another area where a partner can take some of the burden off the other's tasks, especially fatiguing things like housework. And maybe it's not sexy, but putting it in the calendar, making time for it and budgeting for it. Battery power.

Ardra:
I mean, I think that's the adult approach of like, okay, MS might mean that... MS is pretty much the death of spontaneity when it comes to anything, but I do think that, I don't know, get over it. Like most things, MS takes planning, and maybe don't go to the gym on the same day. It should count as physio anyway, really.

Alex Hajjar:
Oh, absolutely. It's crazy the amount of calories that potentially get burned during this act. But what about-

Ardra:
You're using your whole body.

Alex Hajjar:
Yeah. It's like swimming, in a way, if you're doing-

Ardra:
Is it? I don't know, Alex.

Alex Hajjar:
Maybe that's not a great way to describe it, actually.

Ardra:
It's like swimming?

Alex Hajjar:
That's not how I swim, by the way. In case anybody sees me at the lake or a pool or something. That'd be a really awkward.

Ardra:
I need to talk to Nicole because I think you're doing something wrong.

Alex Hajjar:
Yeah, definitely. But what about managing your secondary symptoms?

Ardra:
These are things we know, but we maybe needed a reminder of. I love your idea or your suggestion of helping out your partner. And that can be part of the... Putting it in the calendar takes planning, but also hey, I'm also going to do the laundry and make dinner or whatever. You don't have to worry about those things at the same time. But in terms of the secondary symptoms, I mean spasticity can be managed with meds. Stretching, Botox has really helped with the spasticity in my legs.

Alex Hajjar:
Interesting. I've only heard of that as a thing. I don't really know much about it. I only know of Botox in terms of facial injections, I guess.

Ardra:
You know what, I feel like we should do a whole episode on Botox because it can help people with MS in a lot of ways.

Alex Hajjar:
Interesting. Okay.

Ardra:
Yeah, bladder spasms. I get a handful of shots in both my legs to help with spasticity. And yeah, actually I'm going this week to see my Botox guy. I'm going to ask him if he wants to be on the pod.

Yeah, yeah. Let's do some brainstorming.

Ardra:
Anyway, moving on. What did I say? Spasticity, stretching, meds, Botox. Oh my God, if you're stressed about the state of your bowel or bladder, you are not going to have a good time. That's a deal breaker. Do it when you feel safe. Get creative about managing weakness, or just do what I do and let your partner do all of the work. And if that seems selfish, it's because I am.

Alex Hajjar:
And that's okay. That's totally awesome. I mean, we all know that MS can turn on a dime. Maybe come up with a no blame, no pressure sort of pact, I guess, that lets you opt out without having to explain away the pain or fatigue or a sketchy bladder or bowel.

Ardra:
I love that.

Alex Hajjar:
Maybe a safe word, a safe word for MS.

Ardra:
Yeah, because not tonight, honey, I can't trust my bowel right now is a drag. It's not a sexy thing to say. So yeah, I feel like some cutesy word that works for you and your partner. Just say banana and write a rain check.

Alex Hajjar:
Yeah, exactly. No, that's perfect. I think you have to have a sense of humor about it. Okay, so what about the tertiary symptoms?

Ardra:
Tertiary MS symptoms that can F up your sex life are things like depression and anxiety, low self-esteem. MS can really change how you feel about your body. I have sometimes felt like so much has been taken from me, from my body, that it's heart actually sometimes to imagine that it has anything left to give or that someone else should want it. You need to address and treat depression and anxiety not just for the sake of your sex life, but your overall well-being. And I feel like it can also be a really positive reminder of what your body still can do for you. And that it can sometimes be really reassuring to be like, oh, that's what pleasure feels like. That's a sensory experience that takes me away from the pain or the fatigue, or even briefly. I think there's a lot that's healing there. So these tertiary symptoms that are a lot of the psychological impact. We talked about a low sex drive being a primary symptom, but it can also be a tertiary symptom like a result of something else. My own personal example, I recently bought a bed rail, also known as a bed cane, and I didn't even know what that was until very recently. But it's not that sexy, in my opinion, to have this medical attachment to your bed. But I mean, maybe it is, because falling out of bed is arguably less attractive, maybe.

Alex Hajjar:
I mean, it can function as something to hold onto as well. I don't know. I'm just going to put it out there. I mean, MS or not, everyone has their own insecurities, right?

Ardra:
It's so important to remember that, right? It's like we just think that it's just us, but our partners are wigging out about something.

Alex Hajjar:
Yeah, it's sort of like one of those things where you're hyper self-conscious, but so is everyone else.

Ardra:
Because you're naked.

Alex Hajjar:
Yeah, that too, yeah. I think sex can make any of us vulnerable, and some might blame themselves for not being "enough" for their partners, as in a lack of desire. They may feel rejected, believing that your passive passion, let's say, means you're no longer into them. Or they might feel guilt for wanting you so bad when you know how expensive sex is for you. Maybe they're afraid to bring it up.

Ardra:
Yeah, I think your words saying how expensive it is, is so true. Because it does cost something. And I can see how that could be injuring to the other party, that there is a sacrifice that has to be made, and it's a drag. And I don't really want to think about it that way. And I'm sure my partner doesn't want to think that it's costing me something, but it is. And if you're the person with MS, you can feel that extra pressure of managing the emotions of your partner too. And you don't want to hurt them. You want to reassure them. It's not you, it's me. But it's not you, it's MD. And not everyone understands this also.

Alex Hajjar:
Yeah, it takes a joint approach. You have a common obstacle and it's no one's fault, but teamwork definitely makes the dream work.

Ardra:
I mean, most people, I feel like with MS, want to be the sex machines our partners deserve. Managing any or all of these symptoms is exhausting and it can be overwhelming, but the effort to keep the flame alive can't be one-sided. I hear lots of partners talk about wanting to relieve the burden of MS, and this is one area where there's actually a lot you can do to help.

Alex Hajjar:
Yeah, I think it's so important. It's not the focal point, I guess, of every relationship, but it is a very integral part of a relationship that we take part in completely at the same time. So yes, it is very important to work on it together.

Ardra:
I think there can be lots of feelings of guilt and confusion.

Alex Hajjar:
Yeah, I think it all gets in our heads. Like I said before, we all kind of get inside of our own heads about sex and intimacy, and sometimes it's not good to take everything so seriously.

Ardra:
Totally. It's like you don't have to have the best sex of your life every single time. Sometimes it's just like, okay, well that was good enough.

Alex Hajjar:
Yeah. I mean, as long as it feels good, I think that that's kind of the primary function. I know that sometimes one partner or both partners might not finish, let's say. But if you both had fun, I think that's the whole point of it. And you had this sort of romantic connection and everything as well.

Ardra:
It doesn't always even have to be romantic. But you're right. We're in a loneliness epidemic. We want to strengthen our relationships. I don't want sex to be a casualty MS. It takes work, but it is worth it. And usually even mediocre sex is better than no sex.

Alex Hajjar:
Yeah, exactly. I'll quote Roosevelt here, which is not something I do very often, but comparison is-

Ardra:
Talk about boner-killers.

Alex Hajjar:
Right.

Ardra:
Roosevelt.

Alex Hajjar:
As far as I read on Google, he said that comparison is the thief of joy. And I do think that's genuinely worth saying here. Because like I said, you all get inside of each other's heads, and maybe you have friends that don't have the same challenges as you, and they're talking about their lives and things like that. And you are starting to think like, whoa, where are we? And this is not as good as them. And you kind of get FOMO about stuff. And that's not really the point, I think. So I would say don't worry about what others are doing. Focus on yourself and your enjoyment. And if it's not happening, there's always tomorrow and there's always romance novels. I mean, smut can be a proven motivator.

Ardra:
I did not peg you as a romance novel kind of dude, but I love it. Do you have any recommendations? Should we put a link?

Alex Hajjar:
So I don't off the top of my head, but Nicole runs a very successful Instagram Bookstagram account, and we can put that in the show notes if people want to follow along. It's full of spicy, spicy content. And she regularly reviews, I think, on a very regular basis. So that could improve things, literature.

Ardra:
Yeah, no, I love it. I want to reiterate how genuinely surprised I am when my body lets me feel something that is not pain, discomfort, or weakness. And it is good to remind myself of that even if it takes a bit of effort. And my advice is do what you need to remind yourself the things that make you feel good. For me, it's hard to feel sexy when I haven't showered since the solstice, and I don't want anyone to smell my hair. Spiffing up can add to fatigue, but even I can admit there's something energizing about feeling clean and smelling like not dirt. You don't have to be this version of yourself every day, which you already said. If it doesn't happen today, there's always tomorrow, next week, whatever.

Alex Hajjar:
Another day.

Ardra:
Yeah, well said. Trippers, we want you to know that if MS is impacting your sex life, you are not alone, and it is not your fault. Maybe nobody's talking about it, but so many of us are going through it and we shouldn't have to figure it out on our own. Don't give up. A healthy sex life can have a positive effect on quality of life. Your sex life doesn't have to be a casualty of MS. We hope this episode was helpful and that this is the summer to bring sexy back. That is a wrap on season two. Alex, thank you so much for co-hosting with me.

Alex Hajjar:
Thank you for hosting. It's always so much fun. I can't believe we're 20 episodes. It's crazy.

Ardra:
20. I know. We will be back in September for season three of The Tripping On Air Podcast. Make sure you're following us on your favorite podcast platform. You can also find us on YouTube and at trippingonair.com. Leave a comment letting us know which guests and topics you'd like to hear about next season. We want to connect with you, and I'd love to know your thoughts on this episode.

Alex Hajjar:
Yeah. And have a safe and sexy summer.

Ardra:
Thanks for listening to Tripping on Air. Don't forget to visit us at trippingonair.com.