62 Living with MS means you’ve probably heard your fair share of advice – some helpful, some well-intentioned but misguided, and some that makes you wonder if people think before they speak. For those of you lucky enough to not have MS, imagine having a condition that’s as unpredictable as British weather and as visible as your thoughts. Yeah, it’s a wild ride. So when we get unsolicited advice, it can feel like someone’s trying to fix a spaceship with a hammer and some duct tape. Sometimes, we just need a listening ear, not a solution. Now, let’s talk about some of the advice we often hear – both the well-intentioned misses and the unexpected hits. The Not-So-Helpful Ones Illustration by Brooke Pelczynski. See her post here for more MS-related images addressing similar situations. “You Don’t Look Sick” Oh, I’m sorry, I forgot to wear my “I Have MS” t-shirt today. My bad. This backhanded compliment is a favorite among the clueless. I once had a coworker tell me this right after I dragged myself into the office, feeling like I had run a marathon in my sleep. Invisible illnesses are a thing. Just because we don’t “look” sick doesn’t mean we’re not dealing with a whole host of symptoms under the surface. This comment, while often well-intentioned, can make us feel invalidated and misunderstood. It’s as if people expect us to walk around with a flashing neon sign that says “MS SUFFERER” to be taken seriously. The reality is, a lot of people with MS have become Oscar-worthy actors in their daily lives, putting on a brave face while battling symptoms nobody else can see. “Just Stay Positive!” Why is this advice often unwanted? Because it can feel dismissive of the very real challenges we’re facing. When you’re in the midst of a severe flare-up, struggling with fatigue that makes even lifting your head feel like an impossible task, or dealing with pain that’s off the charts, being told to “stay positive” can seem like a trivial solution to a complex problem. It’s not that positivity isn’t valuable – it absolutely is. But timing is everything. During those tough MS moments, what we often need is acknowledgment of our struggle, not a cheerleading session. We need understanding that it’s okay to not be okay sometimes. So while I’ll always strive for a positive outlook, I’ve learned it’s equally important to give myself permission to feel the full spectrum of emotions. Some days, the most positive thing I can do is simply acknowledge, “This sucks right now, and that’s alright.” And on those days, what I need most isn’t a reminder to stay positive, but a friend who can sit with me in that moment and say, “Yeah, this does suck. I’m here for you.” “Have you tried not eating X, Y, or Z?” Dietary advice can often feel like a minefield of opinions and unsolicited suggestions, especially when it comes from well-meaning but uninformed friends and family. While dietary changes can indeed help manage symptoms for some people with MS (I personally found cutting out gluten beneficial), it’s not a one-size-fits-all solution. Yes, Karen, I know kale is a superfood, but it’s not going to regrow my myelin. MS is a complex neurological condition with symptoms and causes that vary greatly among individuals. Simplifying it to dietary changes can diminish the challenges faced by those living with it. These suggestions can therefore sometimes imply blame or judgment, making it seem like the person with MS is not doing enough to manage their condition. Comments about diet can come across as judgmental, suggesting that if someone hasn’t tried a certain dietary change, they aren’t committed to improving their health. Each person’s experience with MS is unique. What works for one person might not work for another, and personal experiences with dietary changes can vary widely. While some people find relief with specific dietary changes, others may not notice any difference or might even experience opposite effects. Dietary changes should ideally be guided by healthcare professionals, such as nutritionists or doctors, who understand the complexities of MS and can provide advice that works for YOU. Armchair Doctors We’ve all met them – people who suddenly become medical experts and start listing medications and “natural remedies” as if they have MD after their name. I once had a an old family friend corner me at a party, armed with a list of supplements she was convinced would cure my MS. Thanks, but no, I’ll stick to my actual doctor’s advice. While it’s often coming from a place of concern, this kind of unsolicited medical advice can be dangerous. MS is complex, and what works for one person might be harmful to another. It’s important to work closely with healthcare professionals who understand our individual cases. The Doomsday Prophets “Live now because you might end up in a wheelchair next year!” Gee, thanks for the uplifting pep talk. While it’s good to appreciate the present, scaremongering isn’t helpful. I’ve had people tell me horror stories about rapid progression or worst-case scenarios, as if I needed more to worry about. This kind of “advice” often comes from a place of misunderstanding about MS. The reality is, everyone’s journey with MS is different. While it’s important to be prepared for changes, living in constant fear of what might happen robs us of enjoying the present. “So… Have You Tried Yoga? Don’t get me wrong, yoga can be great. But the way some people write about it, you’d think downward dog was the answer to all of life’s problems. So when I see an Instagram post or TikTok talking about it, I want to ask if they’ve tried yoga to cure their unsolicited advice syndrome. While yoga and other forms of exercise can indeed be beneficial for many with MS, they’re not magical cures. It’s important to find forms of movement that work for our individual bodies and situations, if that’s something you would like to do. Illustration by Natalya Lobanova from this hilarous New Yorker article. The Actually Helpful Stuff Couch to… Well, Just Off the Couch For me, walking and Pilates have been incredibly effective. I notice right away when I skip a week—hello, increased nerve pain and stiffness! But remember, what works for me might not work for everyone. Listen to your body and find what feels good for you. The key here is consistency and gentleness. It’s not about pushing to extremes, but rather finding sustainable ways to keep our bodies moving. Some days, that might mean a short walk around the block. Other days, it might be a full Pilates session. The important thing is to keep moving in whatever way feels right! Escaping the Scroll Hole Swapping endless social media scrolling for books, movies, or video games has been surprisingly helpful, especially during those brain fog episodes. I mean, I knew that scrolling for hours on TikTok was bad, but breaking that habit takes time, so it’s not as easy as it sounds. I’ve found that engaging with stories, whether through reading, watching, or interactive games, gives my brain something positive to focus on. It’s a form of mental self-care that can provide a much-needed escape when MS symptoms are being a bitch. Plus, it’s a great way to stay connected with friends through book clubs or gaming sessions when fatigue makes in-person socializing challenging! Illustration by We are Amenable Declutter or Die Trying Marie Kondo, you’re onto something. Turns out, organizing your space really can help organize your thoughts. I’m not saying you need to become a minimalist overnight, but finding a home for everything helps. Now, if only I could remember where I put my keys… No, but having a tidy environment has minimized the frustration of losing items and helps me feel more in control. This doesn’t mean you have to become a minimalist overnight. For me, it started with small things like always putting my keys in the same spot or organizing my medications in a weekly pill organizer. These little habits have made a big difference in reducing daily stress and conserving energy for the things that really matter. Time to Get Back to that Couch! Fatigue is a relentless companion in the MS journey, and learning to rest and relax is essential. Giving yourself permission to rest without guilt can be empowering. This might mean taking a nap, meditating, or simply sitting quietly with a cup of tea. Listen to your body’s cues and allow yourself the grace to recharge without feeling like you have to apologize for it. Sweat it Out! As a Swede, I grew up with saunas. But it wasn’t until MS that I really appreciated their magic. That heat? It’s like a warm hug for my muscles. Just be careful not to overdo it – the last thing you want is to turn into a puddle on the sauna floor. Connect with the MS Community (Which You Are Doing Now!) You know, finding others who really understand what you’re going through can make such a big difference. It’s like having a group of friends who just get it without you having to explain a thing. Whether it’s online forums, local support groups, or social media communities, connecting with other people living is great! Sharing stories, swapping advice, or just having a good vent with people who know exactly where you’re coming from can feel like a giant weight lifted off your shoulders. Because Google Isn’t a Therapist We all know the importance of our neurologists, but let’s not forget about the power of a good therapist who gets what living with a chronic illness like MS is all about. Finding someone who really listens and gives advice that actually fits your life is a very nice thing to have. They can help you deal with the stress and emotional ups and downs that come with MS and giving you the tools to tackle each day. And if all else fails, the best advice is to grab a coffee (and a cinnamon bun). So what about you? What’s the most ridiculous advice you’ve received? Or have you stumbled upon something genuinely helpful?
62 Living with MS means you’ve probably heard your fair share of advice – some helpful, some well-intentioned but misguided, and some that makes you wonder if people think before they speak. For those of you lucky enough to not have MS, imagine having a condition that’s as unpredictable as British weather and as visible as your thoughts. Yeah, it’s a wild ride. So when we get unsolicited advice, it can feel like someone’s trying to fix a spaceship with a hammer and some duct tape. Sometimes, we just need a listening ear, not a solution. Now, let’s talk about some of the advice we often hear – both the well-intentioned misses and the unexpected hits. The Not-So-Helpful Ones Illustration by Brooke Pelczynski. See her post here for more MS-related images addressing similar situations. “You Don’t Look Sick” Oh, I’m sorry, I forgot to wear my “I Have MS” t-shirt today. My bad. This backhanded compliment is a favorite among the clueless. I once had a coworker tell me this right after I dragged myself into the office, feeling like I had run a marathon in my sleep. Invisible illnesses are a thing. Just because we don’t “look” sick doesn’t mean we’re not dealing with a whole host of symptoms under the surface. This comment, while often well-intentioned, can make us feel invalidated and misunderstood. It’s as if people expect us to walk around with a flashing neon sign that says “MS SUFFERER” to be taken seriously. The reality is, a lot of people with MS have become Oscar-worthy actors in their daily lives, putting on a brave face while battling symptoms nobody else can see. “Just Stay Positive!” Why is this advice often unwanted? Because it can feel dismissive of the very real challenges we’re facing. When you’re in the midst of a severe flare-up, struggling with fatigue that makes even lifting your head feel like an impossible task, or dealing with pain that’s off the charts, being told to “stay positive” can seem like a trivial solution to a complex problem. It’s not that positivity isn’t valuable – it absolutely is. But timing is everything. During those tough MS moments, what we often need is acknowledgment of our struggle, not a cheerleading session. We need understanding that it’s okay to not be okay sometimes. So while I’ll always strive for a positive outlook, I’ve learned it’s equally important to give myself permission to feel the full spectrum of emotions. Some days, the most positive thing I can do is simply acknowledge, “This sucks right now, and that’s alright.” And on those days, what I need most isn’t a reminder to stay positive, but a friend who can sit with me in that moment and say, “Yeah, this does suck. I’m here for you.” “Have you tried not eating X, Y, or Z?” Dietary advice can often feel like a minefield of opinions and unsolicited suggestions, especially when it comes from well-meaning but uninformed friends and family. While dietary changes can indeed help manage symptoms for some people with MS (I personally found cutting out gluten beneficial), it’s not a one-size-fits-all solution. Yes, Karen, I know kale is a superfood, but it’s not going to regrow my myelin. MS is a complex neurological condition with symptoms and causes that vary greatly among individuals. Simplifying it to dietary changes can diminish the challenges faced by those living with it. These suggestions can therefore sometimes imply blame or judgment, making it seem like the person with MS is not doing enough to manage their condition. Comments about diet can come across as judgmental, suggesting that if someone hasn’t tried a certain dietary change, they aren’t committed to improving their health. Each person’s experience with MS is unique. What works for one person might not work for another, and personal experiences with dietary changes can vary widely. While some people find relief with specific dietary changes, others may not notice any difference or might even experience opposite effects. Dietary changes should ideally be guided by healthcare professionals, such as nutritionists or doctors, who understand the complexities of MS and can provide advice that works for YOU. Armchair Doctors We’ve all met them – people who suddenly become medical experts and start listing medications and “natural remedies” as if they have MD after their name. I once had a an old family friend corner me at a party, armed with a list of supplements she was convinced would cure my MS. Thanks, but no, I’ll stick to my actual doctor’s advice. While it’s often coming from a place of concern, this kind of unsolicited medical advice can be dangerous. MS is complex, and what works for one person might be harmful to another. It’s important to work closely with healthcare professionals who understand our individual cases. The Doomsday Prophets “Live now because you might end up in a wheelchair next year!” Gee, thanks for the uplifting pep talk. While it’s good to appreciate the present, scaremongering isn’t helpful. I’ve had people tell me horror stories about rapid progression or worst-case scenarios, as if I needed more to worry about. This kind of “advice” often comes from a place of misunderstanding about MS. The reality is, everyone’s journey with MS is different. While it’s important to be prepared for changes, living in constant fear of what might happen robs us of enjoying the present. “So… Have You Tried Yoga? Don’t get me wrong, yoga can be great. But the way some people write about it, you’d think downward dog was the answer to all of life’s problems. So when I see an Instagram post or TikTok talking about it, I want to ask if they’ve tried yoga to cure their unsolicited advice syndrome. While yoga and other forms of exercise can indeed be beneficial for many with MS, they’re not magical cures. It’s important to find forms of movement that work for our individual bodies and situations, if that’s something you would like to do. Illustration by Natalya Lobanova from this hilarous New Yorker article. The Actually Helpful Stuff Couch to… Well, Just Off the Couch For me, walking and Pilates have been incredibly effective. I notice right away when I skip a week—hello, increased nerve pain and stiffness! But remember, what works for me might not work for everyone. Listen to your body and find what feels good for you. The key here is consistency and gentleness. It’s not about pushing to extremes, but rather finding sustainable ways to keep our bodies moving. Some days, that might mean a short walk around the block. Other days, it might be a full Pilates session. The important thing is to keep moving in whatever way feels right! Escaping the Scroll Hole Swapping endless social media scrolling for books, movies, or video games has been surprisingly helpful, especially during those brain fog episodes. I mean, I knew that scrolling for hours on TikTok was bad, but breaking that habit takes time, so it’s not as easy as it sounds. I’ve found that engaging with stories, whether through reading, watching, or interactive games, gives my brain something positive to focus on. It’s a form of mental self-care that can provide a much-needed escape when MS symptoms are being a bitch. Plus, it’s a great way to stay connected with friends through book clubs or gaming sessions when fatigue makes in-person socializing challenging! Illustration by We are Amenable Declutter or Die Trying Marie Kondo, you’re onto something. Turns out, organizing your space really can help organize your thoughts. I’m not saying you need to become a minimalist overnight, but finding a home for everything helps. Now, if only I could remember where I put my keys… No, but having a tidy environment has minimized the frustration of losing items and helps me feel more in control. This doesn’t mean you have to become a minimalist overnight. For me, it started with small things like always putting my keys in the same spot or organizing my medications in a weekly pill organizer. These little habits have made a big difference in reducing daily stress and conserving energy for the things that really matter. Time to Get Back to that Couch! Fatigue is a relentless companion in the MS journey, and learning to rest and relax is essential. Giving yourself permission to rest without guilt can be empowering. This might mean taking a nap, meditating, or simply sitting quietly with a cup of tea. Listen to your body’s cues and allow yourself the grace to recharge without feeling like you have to apologize for it. Sweat it Out! As a Swede, I grew up with saunas. But it wasn’t until MS that I really appreciated their magic. That heat? It’s like a warm hug for my muscles. Just be careful not to overdo it – the last thing you want is to turn into a puddle on the sauna floor. Connect with the MS Community (Which You Are Doing Now!) You know, finding others who really understand what you’re going through can make such a big difference. It’s like having a group of friends who just get it without you having to explain a thing. Whether it’s online forums, local support groups, or social media communities, connecting with other people living is great! Sharing stories, swapping advice, or just having a good vent with people who know exactly where you’re coming from can feel like a giant weight lifted off your shoulders. Because Google Isn’t a Therapist We all know the importance of our neurologists, but let’s not forget about the power of a good therapist who gets what living with a chronic illness like MS is all about. Finding someone who really listens and gives advice that actually fits your life is a very nice thing to have. They can help you deal with the stress and emotional ups and downs that come with MS and giving you the tools to tackle each day. And if all else fails, the best advice is to grab a coffee (and a cinnamon bun). So what about you? What’s the most ridiculous advice you’ve received? Or have you stumbled upon something genuinely helpful?
62 Living with MS means you’ve probably heard your fair share of advice – some helpful, some well-intentioned but misguided, and some that makes you wonder if people think before they speak. For those of you lucky enough to not have MS, imagine having a condition that’s as unpredictable as British weather and as visible as your thoughts. Yeah, it’s a wild ride. So when we get unsolicited advice, it can feel like someone’s trying to fix a spaceship with a hammer and some duct tape. Sometimes, we just need a listening ear, not a solution. Now, let’s talk about some of the advice we often hear – both the well-intentioned misses and the unexpected hits. The Not-So-Helpful Ones Illustration by Brooke Pelczynski. See her post here for more MS-related images addressing similar situations. “You Don’t Look Sick” Oh, I’m sorry, I forgot to wear my “I Have MS” t-shirt today. My bad. This backhanded compliment is a favorite among the clueless. I once had a coworker tell me this right after I dragged myself into the office, feeling like I had run a marathon in my sleep. Invisible illnesses are a thing. Just because we don’t “look” sick doesn’t mean we’re not dealing with a whole host of symptoms under the surface. This comment, while often well-intentioned, can make us feel invalidated and misunderstood. It’s as if people expect us to walk around with a flashing neon sign that says “MS SUFFERER” to be taken seriously. The reality is, a lot of people with MS have become Oscar-worthy actors in their daily lives, putting on a brave face while battling symptoms nobody else can see. “Just Stay Positive!” Why is this advice often unwanted? Because it can feel dismissive of the very real challenges we’re facing. When you’re in the midst of a severe flare-up, struggling with fatigue that makes even lifting your head feel like an impossible task, or dealing with pain that’s off the charts, being told to “stay positive” can seem like a trivial solution to a complex problem. It’s not that positivity isn’t valuable – it absolutely is. But timing is everything. During those tough MS moments, what we often need is acknowledgment of our struggle, not a cheerleading session. We need understanding that it’s okay to not be okay sometimes. So while I’ll always strive for a positive outlook, I’ve learned it’s equally important to give myself permission to feel the full spectrum of emotions. Some days, the most positive thing I can do is simply acknowledge, “This sucks right now, and that’s alright.” And on those days, what I need most isn’t a reminder to stay positive, but a friend who can sit with me in that moment and say, “Yeah, this does suck. I’m here for you.” “Have you tried not eating X, Y, or Z?” Dietary advice can often feel like a minefield of opinions and unsolicited suggestions, especially when it comes from well-meaning but uninformed friends and family. While dietary changes can indeed help manage symptoms for some people with MS (I personally found cutting out gluten beneficial), it’s not a one-size-fits-all solution. Yes, Karen, I know kale is a superfood, but it’s not going to regrow my myelin. MS is a complex neurological condition with symptoms and causes that vary greatly among individuals. Simplifying it to dietary changes can diminish the challenges faced by those living with it. These suggestions can therefore sometimes imply blame or judgment, making it seem like the person with MS is not doing enough to manage their condition. Comments about diet can come across as judgmental, suggesting that if someone hasn’t tried a certain dietary change, they aren’t committed to improving their health. Each person’s experience with MS is unique. What works for one person might not work for another, and personal experiences with dietary changes can vary widely. While some people find relief with specific dietary changes, others may not notice any difference or might even experience opposite effects. Dietary changes should ideally be guided by healthcare professionals, such as nutritionists or doctors, who understand the complexities of MS and can provide advice that works for YOU. Armchair Doctors We’ve all met them – people who suddenly become medical experts and start listing medications and “natural remedies” as if they have MD after their name. I once had a an old family friend corner me at a party, armed with a list of supplements she was convinced would cure my MS. Thanks, but no, I’ll stick to my actual doctor’s advice. While it’s often coming from a place of concern, this kind of unsolicited medical advice can be dangerous. MS is complex, and what works for one person might be harmful to another. It’s important to work closely with healthcare professionals who understand our individual cases. The Doomsday Prophets “Live now because you might end up in a wheelchair next year!” Gee, thanks for the uplifting pep talk. While it’s good to appreciate the present, scaremongering isn’t helpful. I’ve had people tell me horror stories about rapid progression or worst-case scenarios, as if I needed more to worry about. This kind of “advice” often comes from a place of misunderstanding about MS. The reality is, everyone’s journey with MS is different. While it’s important to be prepared for changes, living in constant fear of what might happen robs us of enjoying the present. “So… Have You Tried Yoga? Don’t get me wrong, yoga can be great. But the way some people write about it, you’d think downward dog was the answer to all of life’s problems. So when I see an Instagram post or TikTok talking about it, I want to ask if they’ve tried yoga to cure their unsolicited advice syndrome. While yoga and other forms of exercise can indeed be beneficial for many with MS, they’re not magical cures. It’s important to find forms of movement that work for our individual bodies and situations, if that’s something you would like to do. Illustration by Natalya Lobanova from this hilarous New Yorker article. The Actually Helpful Stuff Couch to… Well, Just Off the Couch For me, walking and Pilates have been incredibly effective. I notice right away when I skip a week—hello, increased nerve pain and stiffness! But remember, what works for me might not work for everyone. Listen to your body and find what feels good for you. The key here is consistency and gentleness. It’s not about pushing to extremes, but rather finding sustainable ways to keep our bodies moving. Some days, that might mean a short walk around the block. Other days, it might be a full Pilates session. The important thing is to keep moving in whatever way feels right! Escaping the Scroll Hole Swapping endless social media scrolling for books, movies, or video games has been surprisingly helpful, especially during those brain fog episodes. I mean, I knew that scrolling for hours on TikTok was bad, but breaking that habit takes time, so it’s not as easy as it sounds. I’ve found that engaging with stories, whether through reading, watching, or interactive games, gives my brain something positive to focus on. It’s a form of mental self-care that can provide a much-needed escape when MS symptoms are being a bitch. Plus, it’s a great way to stay connected with friends through book clubs or gaming sessions when fatigue makes in-person socializing challenging! Illustration by We are Amenable Declutter or Die Trying Marie Kondo, you’re onto something. Turns out, organizing your space really can help organize your thoughts. I’m not saying you need to become a minimalist overnight, but finding a home for everything helps. Now, if only I could remember where I put my keys… No, but having a tidy environment has minimized the frustration of losing items and helps me feel more in control. This doesn’t mean you have to become a minimalist overnight. For me, it started with small things like always putting my keys in the same spot or organizing my medications in a weekly pill organizer. These little habits have made a big difference in reducing daily stress and conserving energy for the things that really matter. Time to Get Back to that Couch! Fatigue is a relentless companion in the MS journey, and learning to rest and relax is essential. Giving yourself permission to rest without guilt can be empowering. This might mean taking a nap, meditating, or simply sitting quietly with a cup of tea. Listen to your body’s cues and allow yourself the grace to recharge without feeling like you have to apologize for it. Sweat it Out! As a Swede, I grew up with saunas. But it wasn’t until MS that I really appreciated their magic. That heat? It’s like a warm hug for my muscles. Just be careful not to overdo it – the last thing you want is to turn into a puddle on the sauna floor. Connect with the MS Community (Which You Are Doing Now!) You know, finding others who really understand what you’re going through can make such a big difference. It’s like having a group of friends who just get it without you having to explain a thing. Whether it’s online forums, local support groups, or social media communities, connecting with other people living is great! Sharing stories, swapping advice, or just having a good vent with people who know exactly where you’re coming from can feel like a giant weight lifted off your shoulders. Because Google Isn’t a Therapist We all know the importance of our neurologists, but let’s not forget about the power of a good therapist who gets what living with a chronic illness like MS is all about. Finding someone who really listens and gives advice that actually fits your life is a very nice thing to have. They can help you deal with the stress and emotional ups and downs that come with MS and giving you the tools to tackle each day. And if all else fails, the best advice is to grab a coffee (and a cinnamon bun). So what about you? What’s the most ridiculous advice you’ve received? Or have you stumbled upon something genuinely helpful?