Top 10 Myths About MS

Ardra Shephard:
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.
MS is the most common disabling disease affecting young adults. With rates as high as one in 300 in some parts of Canada, if you don't already know someone with MS, chances are you will. And yet, there is so much confusion as to what the F MS actually is. Today's episode is a cheeky mix of fact and fiction, as we take a deep dive into 10 of the biggest myths about MS. Yeah, I was 23 when I was diagnosed, and I didn't know anything about MS.

Alex Hajjar:
When we found out about Nicole's MS. I mean, I had been on the periphery. Like I said, I think some people know that my aunt has had it for ages, so I kind of knew a little bit about it. And I don't think I reacted any differently than someone who has no idea. I didn't really have any clue.

Ardra Shephard:
Really?

Alex Hajjar:
Yeah, no. I knew... Yeah.

Ardra Shephard:
Also, I feel like that is one of the myths, is everyone has an aunt with MS, who's totally cured with kale and diet, or totally dead.

Alex Hajjar:
Well, yeah, I would never say that, because you live with it. You live with it growing up anyways, or I did. So like I said, I knew a little bit about it, and I knew mobility was going to be difficult. But aside from that, I probably fell into all of these things that we're going to talk about.

Ardra Shephard:
I love it. Okay, well, myth number one, MS is your fault. That's a myth. It's not true. And I point it out because when I was first diagnosed, I looked for reasons. Of course, I was like, "Why me?" We are a meaning-seeking species. I think it's a normal question to ask. But what was surprising to me over the years was hearing stories from people who had come up with all kinds of zany, let's say, theories as to why they got MS. And I also did this.
So as I said, I was diagnosed when I was 23, and it was right after Halloween, and I'd had this boozy night with my girlfriends, and we had a book of spells. And we didn't do anything evil, but I, for a long time, felt that I had done something, like invited some dark arts forces into my life. It seems so... I'm embarrassed to actually admit this story. It's so crazy. But at the time, I really was like, there had to be a reason. Did Nicole go through anything like that?

Alex Hajjar:
Yeah. Sorry, I chuckled earlier, but I was laughing because I do that thing where you blame yourself for something, or you think, "Why me," when I stub my toe. So from the smallest thing to the biggest thing, I think that's a normal thing for all of us to do. But yeah, I think one of the biggest things was we all grew up partying and stuff like that, so I think doing recreational drugs was something that we question as, "Could that be... It affects your brain, and this and that."
But I don't think there's any research that actually shows that that's the case, but it's one of those things where you're doing that. Or I think when your young, Nicole told me she did this thing with her friends where they would try to make each other faint. And so starving yourself of oxygen or something like that. So these goofy games that you think are nonplus or whatever, you're just trying to find any excuse, and it's, I guess, a matter of placing blame. But it's not a thing. It's not a thing. It just happens.

Ardra Shephard:
I guess what I want to say is that it's normal to look for these reasons, but that it's not your fault. And even, "Hi, mom. It's also not your fault." I think sometimes our parents can be like... But yeah, you probably did some other shit for sure, but you didn't give me MS.

Alex Hajjar:
Yeah. There's other trauma. We could talk about that. But not the MS. And I think also-

Ardra Shephard:
I love you mom.

Alex Hajjar:
When Nicole had her first episode, let's say, for lack of a better word, when we were in France, it had just happened after a very stressful work event, so stress was... You blame the stress as well, which I think is normal.

Ardra Shephard:
I think that's normal, especially when we have relapses. And I think there's this feeling of don't let stress get to you, you're going to make yourself sick. And there's nothing more stressful than feeling like I have to now control the stress to not make myself get sick. It's a vicious, vicious cycle. I did some research on this and Pew Research said that 35% of people think that bad stuff happens to them just because that's life, shit happens. 13% think it's God's will. 8% think it's because they did something bad, or sinful, or wrong, or that it's some kind of punishment. And that's a high number, 8%. I just don't want you to think that MS is your fault. Sometimes bad stuff happens to bitchy people, and it's just a coincidence.

Alex Hajjar:
You can still be a dick. You still have a license to do that, I think.

Ardra Shephard:
Well, I think that brings me to myth number two, which is everything happens for a reason.

Alex Hajjar:
Technically true. The Holocaust happened for a reason. People are evil. Evil stuff happens. But with MS, I guess scientific reasons, we're still trying to figure that out. If it's helpful to see it as a growth opportunity, make lemonade out of lemons, not the other way around, cool. But I don't think there's any pressure. I mean, if you want to stay a dick, it's cool.

Ardra Shephard:
Yeah. It's like you don't have to necessarily take this diagnosis and learn something from it, or become a better person, or whatever. I think, I don't know, a lot of us do. I think I probably did,.but you don't have to. Are we articulating this, at all, right? I think the point I really want to make is that when somebody else says this to me, it can feel like toxic positivity. Everything happens for a reason. I feel like it's kind of okay if you say it to yourself, but not if somebody else says it to you. It's for you to decide.

Alex Hajjar:
I think that... Yeah. And that goes for a lot of things, almost anything. But yeah, don't tell me how I should feel about this thing that's happening to me. I can be that judge for myself.

Ardra Shephard:
Yeah. Yeah. Totally.

Alex Hajjar:
So I think we'll go to myth three, right?

Ardra Shephard:
Okay, sure. Fact or fiction?

Alex Hajjar:
Is MS contagious?

Ardra Shephard:
I wish that I could give it to my enemies.

Alex Hajjar:
What a power that would be.

Ardra Shephard:
No, I don't have any enemies. Don't send any letters, if you think you're my enemy.

Alex Hajjar:
They won't get opened.

Ardra Shephard:
You know what? When I was diagnosed, when I was sick, when I first went home... Or when I was first diagnosed, I went to stay with my parents for a time to get better, and my brother was a teenager still. He was still at home. And my mom gave me his room. And yeah, I know. He told her, he didn't say anything to me, to his credit, he was a teenager, but he was worried that it was contagious, that I would leave something in the sheets or something. It's not contagious. But I was diagnosed in 2001. In 2002, there was some sketchy study that came out suggesting that MS was sexually transmitted. And I feel like the media-

Alex Hajjar:
I can't imagine that was good for your sex life.

Ardra Shephard:
It was not. It was not.

Alex Hajjar:
Yeah. I feel like that would interrupt things. But I think more recently, I've read things that have said that Epstein-Barr virus is associated with MS and Epstein-Barr virus is... It's mono. It's a kissing disease. Doesn't that make it contagious?

Ardra Shephard:
Well, yes. I mean, it's actually pretty exciting research. And it's not that new, but it is becoming more and more accepted that there is a link between exposure to the Epstein-Barr virus as a precursor to MS. But most people are exposed to Epstein-Barr, and most people don't get MS. But if you have MS, you have almost certainly been exposed to Epstein-Barr. Does that make sense?

Alex Hajjar:
Yeah. Isn't it kind of like not everybody who's had Epstein-Barr has MS, but everybody who has MS has Epstein-Barr. Does that make sense? I think I just said the exact same thing you just said.

Ardra Shephard:
It makes sense to me. But I think it's also a compelling reason to support research that looks into vaccines for Epstein-Barr and antiviral therapies that might help MS. But it's not a reason to stop kissing frogs. Yeah. We don't want you to be afraid of... Of course, wash your hands. Don't expose yourself unnecessarily to germs. But if you have MS, you're not going to pass it on to anybody. I feel like we could be creating fear here, where there shouldn't be any. MS is not contagious.

Alex Hajjar:
Number four is you can only get one disease at a time.

Ardra Shephard:
This is a myth that I totally made up myself, for my own benefit. I just think-

Alex Hajjar:
So why did you make up this myth?

Ardra Shephard:
Because I spend enough time in doctor's offices. I don't want to get a mammogram, or a colonoscopy, or whatever. I feel like I already won the disease lottery. What are the chances I'm going to have two major things wrong with me? So yeah, it's like lightning only strikes once or whatever. It's a myth.

Alex Hajjar:
Yeah. I mean, the whole thing now is I see the word comorbidities a lot more these days, so I feel like that's-

Ardra Shephard:
That's such a nasty word, right?

Alex Hajjar:
I think it sounds awful. But it's worth mentioning for awareness purposes. There's no chance that you can only get one thing at a time. Plenty of people deal with multitudes of illnesses or whatever. But is it less likely to be believed?

Ardra Shephard:
Well, I think even before we talk about that, I think the reality is that, actually, if you have one autoimmune disease, which MS is considered an autoimmune disease, you are actually more likely to have more than one autoimmune disease. So MS itself comes with any number of comorbidities. I've said this before, that having MS can feel like having a bunch of different conditions, because vision loss feels like a completely different illness than problems with mobility or sensory problems. You know what I mean?

Alex Hajjar:
Yeah.

Ardra Shephard:
But when we talk about having a completely other autoimmune diseases, the numbers are pretty high. Up to 30% of people with MS will have another autoimmune disease.

Alex Hajjar:
Going back to, I guess, my previous question. Is this a myth less likely to be believed?

Ardra Shephard:
So I think people with complex illnesses, so with lots of stuff going on, I think can be dismissed as having psychiatric issues, or stress, or anxiety. And there is a lot of medical gaslighting that does go on.

Alex Hajjar:
And this is from doctors and people who surround you, friends, and family, and stuff like that?

Ardra Shephard:
Yeah. I mean, I'm speaking anecdotally and not necessarily scientifically, but I think if you can look up and see, especially women who are not as likely to be believed. And I think autoimmune conditions can also have vague symptoms. They can be hard to diagnose sometimes. Doctors, if they don't know the answer, are not comfortable admitting that.

Alex Hajjar:
Yeah. They might write it off. I think it's worth making sure or ensuring that you're seeing doctors that have empathy, that will listen, and to me, personally, will admit when they don't know something, and that they'll go and learn it, and that they're doing that for you. Hopefully, that's not a pie-in-the-sky wish. But I mean, it's very cool to have doctors who do that over, "Oh, you're just stressed," or, "You're just experiencing this," or something like that.

Ardra Shephard:
Just anxiety. Yeah. Well, I think there are so many doctors out there that do take that approach. So if that's not your experience, you just have to keep looking. Because you are the expert in your body. You're the one that knows when something isn't cool, when something just isn't right.

Alex Hajjar:
Fair enough. All right. Myth number six, not everyone ends up in wheelchair.

Ardra Shephard:
Alex, I feel like I talk about how much I hate this phrase in every episode of the podcast, but it's so pervasive, and I keep hearing people say it, so I'm just going to keep saying it. Because the myth here is that, number one, wheelchair use is not the end. And the second part of that myth is that wheelchairs are the enemy. So if you have to say this, can you maybe just please reword it so that it sounds more like, "Not everyone with MS will have difficulty walking." Or even if you need to be more blunt about it, "Not everyone will lose the ability to walk." That's a more accurate statement. And if you feel like the words are just trying to come out of your mouth, take a beat to think about how that statement makes somebody who is already a wheelchair user feel.

Alex Hajjar:
Right. Yeah, it's an intense thing to say. And I tend to give my opinions really quickly, and that's a history of doing that. But I definitely check myself a lot more often now, because you don't want to barf out something super harmful to somebody. And it's not the end of the world. And I mean, I've read, again, more anecdotes, but I've read stories of people with people with MS who, they go running. They go running. And I'm like, "What?" And they're in their fifties, or they do two miles a day, or something. And I'm like, "That is..."

Ardra Shephard:
Honestly, I didn't run, even when I could. Unless somebody's chasing me, I don't miss running.

Alex Hajjar:
Right. But there are examples of people doing that and not having mobility hurdles at some point. But the phrase itself is toxic in and of itself, because you're creating this, I guess, idea that this is an inevitability, you definitely will end up there, and that isn't the case.

Ardra Shephard:
I think more than that, it's not comforting. I think that doctors say it or other people say it, patients say it to themselves or to other people, in a way to be comforting. But to me, it's actually more of a manifestation of fear. I never walk around saying, "You know what? Most pedestrians don't get hit by buses and die. I'm going for a walk, and I'm going to be okay because most pedestrians don't get hit by buses." I don't think about the murder bus because I take for granted that I'm not going to get hit by that bus.
And so if you're really not worried about losing the ability to walk, then this sentence isn't even on your radar. And I think by saying it and reinforcing it, it's reinforcing a fear more than it is providing comfort. And it's setting you or anyone else up for frustration and heartbreak if you do eventually encounter a wheelchair, because you've made it the scary thing and not what it means to need a wheelchair. It's that loss of independence, that loss of mobility.
Anyway, I feel like it's just words, but words do matter, and they do leave an impact on what you tell yourself. But everything we think now seems to be so public, and there are ramifications for other people. And I personally find it really hurtful when I hear other people say that, because I'm not a full-time wheelchair user, but I do use mobility aids and a wheelchair from time to time. I can see what's in my future, and I don't want to feel like the outlier, and the failure, and all of those gross things.

Alex Hajjar:
Yeah. So bottom line, stop doing it.

Ardra Shephard:
Stop doing it.

Alex Hajjar:
Or just think about your words a little bit more and try to be better. But yeah. I think moving on to myth number seven, if you don't have symptoms, then MS is under control.

Ardra Shephard:
This is such a tough one.

Alex Hajjar:
Yeah. I mean, it's because a lot of... It could be invisible. Things are going on, and they're invisibly behind the scenes causing shit, which isn't fun. So I mean, is smouldering MS something we can mention here? I feel like that's a background thing that might be going on. Or is that too new?

Ardra Shephard:
I think this is a very high-level and complicated discussion. And I think, to me, this myth is maybe more directed at so-called benign MS. So you can't really say that MS is benign until... That's something you can only say after many, many years of not having had too much disease activity. But MS is so unpredictable, and you can have a relapse at any time. And what's scary about that is that it could be mild, or it could be severe, but you can't undo that damage necessarily, once it's happened.

Alex Hajjar:
Sorry. I just wanted to ask. What can people do, then, to dispel this myth? Can people actively do something if they are thinking that this is the case?

Ardra Shephard:
I mean, this is my own bias, feeling that early intervention is critical. I do believe that medication is something really important to consider. Of course, there are lifestyle factors, diet, exercise. You have to take your health seriously and control the risk factors that you can. So we know that early intervention with highly effective medication is helpful. We also know that there are lifestyle factors that influence outcomes too.
And that's hard, I think, sometimes for people to grapple with. Also, smoking and obesity are modifiable risk factors. So I think you don't necessarily want to just be complacent with your MS, because you're not having debilitating attacks. You could be having lesions in parts of your brain that don't cause symptoms, and that can accumulate. And that's another reason why you need to get regular MRIs, whether you feel like your MS is acting up or not, if that makes sense.

Alex Hajjar:
No. I guess if you're waiting and seeing what happens, that's the big risk.

Ardra Shephard:
Wait and see is a really risky proposition. I don't like it.

Alex Hajjar:
I find old boomers do that. They're just like, "Ah, I feel sick, but I'm not going to do anything about it." And that's terrible. That's when you should be going to the doctor.

Ardra Shephard:
That's a whole nother story. But okay, so before we get onto the next one, I have a question. Did Nicole have symptoms... Did she feel like she'd had... Looking back, did it seem like she'd had MS for a lot longer than when she was diagnosed?

Alex Hajjar:
Yeah. I mean, when the diagnosis came and we processed it, I think there was a moment where we were like, "Oh, those other things kind of make sense now." Whether I think maybe there was some balance stuff and there was some internal issues that had come up, and we thought we solved them, obviously. And then the kicker was the optical neuritis. When that started happening in France, that was the real first event that got the diagnosis underway kind of thing.
But yeah, it was after that, like I said. And you are thinking like, "Oh, this is happening." But we did go to the doctor for the other stuff. But the MS just never came up. It was never a thing that the doctors were like, "It might be this." It wasn't until the optic neuritis and the time in France that the doctors there took that they recognized that that might be the case.

Ardra Shephard:
That's so interesting. Yeah, I feel like that feels like a bit of a non-sequitur, but it leads into the next myth.

Alex Hajjar:
Yeah. I will say that once we did get the diagnosis, and again, process it and everything like that, we are now much more diligent about, if something happens, then we consult a doctor. If something happens, we consult whoever we need to consult, who has that information.

Ardra Shephard:
And you say we. Do you mean specifically with Nicole's health? Or are you more likely to take some weird symptom more seriously with your own health also?

Alex Hajjar:
Yeah. No, no. I mean, I come from a technical background, so I'm very much trusting of medical professionals. And we have a very good family doctor, thankfully, so I have trust in the system. And when something does come up, then I will go get it checked, blood pressure, or panic attacks, or anxiety, or something like that. Anything that comes up, I'll consult them anyways. There's no harm in asking. So even if it's a small thing, it's worth the 15-minute call, or whatever it takes to do it. So yeah, that's my advice, for whatever it's worth.

Ardra Shephard:
That's good. You're not like me with the, "I can't afford... I can't have any more things wrong with me. I don't have time for that."

Alex Hajjar:
Yeah. Well, I need to be at the top of my game too. I need to be up there to be doing stuff and things. I just don't want to take the risk. I'm risk averse. That's the name of the game. Risk... Risk? Myth number seven, MS is an old person's disease. I don't think that's the case.

Ardra Shephard:
So it's not. Yeah. I think if you have MS, you probably already know that most people are diagnosed between 20 and 40. You can really get diagnosed at any age, but I sometimes think people who are much older may have had symptoms for a long time and just gone undiagnosed for many years. That's possible. I don't know. When I was doing some research for this episode, I knew that pediatric MS was a thing. I was surprised to learn that it's 3-5% of MS cases are under age 16. But what really surprised me was learning that all pediatric MS cases start as relapsing and remitting.

Alex Hajjar:
Oh, there's no cases that start primary or secondary progressive, or anything like that? Interesting.

Ardra Shephard:
Yeah, just fun fact.

Alex Hajjar:
I feel like 3-5% is not insignificant either. It seems kind of high, to be fair, so that's a little bit worrying. So when I was younger, I knew a cousin who had a kid who had mono. I just remember that because it was one of the only people that had it. So Epstein-Barr, I guess. Is that an indication... I'm just thinking out loud, really. But is that an indication that that might bring on MS, even at that age? They were not old. They were like three or four years old.

Ardra Shephard:
No.

Alex Hajjar:
Myth busted.

Ardra Shephard:
I don't know. That's way too sciencey, and I don't want to get in over my head of saying shit I'm unqualified to say. But I mean, most people are exposed to Epstein-Barr virus, and it can lead to other shit too. But yeah. No. I think pediatric cases do seem to be increasing, but diagnostics are also better. And I don't know.
I think maybe in the past, a kid could have presented with symptoms that might not have been on a doctor's radar, thinking this isn't a disease that kids get. But of course, it is possible. But I think also, again, early intervention. And it's good-ish news, I guess, that children aren't presenting with primary progressive MS. Relapsing remitting is much more modifiable, and there are more interventions. So I would think the prognosis would be generally better.

Alex Hajjar:
So the next myth that we'll talk about, which I can't even believe this is a myth, to be honest, but that MS does not cause pain.

Ardra Shephard:
If you have MS, you already know that this is total bullshit. But for a long time, I think even when I was diagnosed, I was told that MS doesn't cause pain, which is ludicrous. MS can cause pain from spasticity, muscular, skeletal, pain from lack of movement, neuropathic pain, which is the hardest to treat. And then, pain from, for me, walking into shit, and falling down, and oh my God, emotional pain. Yeah.

Alex Hajjar:
Yeah, I was going to say there's physical pain, but there's also emotional pain. There's regrets and... Maybe not regrets, but things you wish you didn't have to stop doing because of the pain or other issues.

Ardra Shephard:
Yeah. Anxiety, depression, that is all pain. But the unrelenting nature of neuropathic pain is... Yeah, it's stunning to me that anyone was ever told that MS doesn't cause pain. It is a painful disease.

Alex Hajjar:
Yeah, I can't argue with this. I know, because obviously, I live with it and I see it in real-time. And sometimes it's surprise pain. We are just watching a movie, and boo, pain's here. And there's pain, and you have to massage. And there's a lot of treatments that we try to do, but the pain is pervasive, and it's there. So I don't think there's any argument with this myth. It's total crap. You will experience it, unfortunately, so don't believe anybody who tells you you won't.

Ardra Shephard:
I think maybe it's one of those myths born out of, "You look so good." It's the young person's, "You're not bleeding." So it's harder to see. Maybe that's what makes it harder to believe. I don't know. It's real, and I don't like it.

Alex Hajjar:
Yeah, fair enough. All right. I think I've been saying all these myths. I think this is the last one. This is actually a super cool one, so I'll leave it to you, because this is cool.

Ardra Shephard:
Myth number 10 is that people with MS are descended from vikings. And this one might actually be true. I'm not going to challenge it, because it's kind of badass and I like it.

Alex Hajjar:
So where does this myth come from?

Ardra Shephard:
I mean, there are some very old studies, and I don't know if anyone is still actually looking into this, but vikings may have passed around a genetic susceptibility when they settled, plundered, British Isles, Scandinavia, Canada, the US, all these hotspots where MS lives. So I did some research also. There is a Norse word for the distance a reindeer can travel before it has to pee.

Alex Hajjar:
And if you know MS, then you know what this means.

Ardra Shephard:
Yeah. That distance for reindeer is seven kilometres. And I feel seen by the Viking... It was that important, that they had to come up with a word for it. The word is... I'm not going to pronounce this right. Poronkusema. I don't know. It's unpronounceable.

Alex Hajjar:
Yeah, I'm going to butcher it, but I think it's poronkusema. That's what I'll say.

Ardra Shephard:
I feel like I need that kind of word for the distance in the car that I can go between rest stops. That's a very MS-ey word to have.

Alex Hajjar:
Yeah. There should be a gauge on your car that just says poronkusema limit.

Ardra Shephard:
Totally. Right.

Alex Hajjar:
Yeah. So do you have a Viking name then? Do you get a Viking name if you have MS?

Ardra Shephard:
I went on Buzzfeed, of course, the source of everything. And my Viking name is, I'm also not going to pronounce this... Hróarr. I feel like it's pronounced like a scream. It's H-R-Ó-A-R-R with the accent. Do they call it Aigu in Norse? No, probably not. That's French. But I don't know. whatever. It feels kind of badass. I feel like-

Alex Hajjar:
That's cool.

Ardra Shephard:
It's a good origin story.

Alex Hajjar:
Yeah. So I think that's all the myths, right?

Ardra Shephard:
I mean, that's all we're going to talk about today, because there's so much... Come on, there's so much confusion. We're just scratching the iceberg of demystifying some of this. Maybe even in the process, creating some more random rumours. I don't know.

Alex Hajjar:
Just listeners with like, "I have more questions now."

Ardra Shephard:
Exactly. Exactly.

Alex Hajjar:
But hopefully, we've cleared up some of the more prevalent MS myths for you today. Yeah. But I think we have one more.

Ardra Shephard:
We do. Yeah, we do have one more myth. It's a pretty massive one to cover, and we really do need a full episode to unpack it. So tune in next month, when we will help sort out fact from fiction. We have a very special guest coming for that episode. And yeah, if you think you know what that one last myth that we're going to tackle is, drop it in the comments. I would love to know, not just what myths you think we maybe missed, but also if you have some crazy story, theory, as to why you thought you got MS, like recreational drugs or witchcraft, in my case.
Drop that in the comments too. Because I think it can be entertaining, but it can also help people realize that you're not the only one to let your mind go to these strange and fascinating places. So thanks for tuning in, trippers. If you liked this episode, subscribe, like, share, do all the things, and we will see you next time. Thanks for listening to Tripping on Air. Don't forget to visit us at trippingonair.com.