333 Newly diagnosed with MS? Welcome to MS 101 – the stuff they forget to tell you. Well, hello there, fellow new MS club member. I’d say “welcome,” but yeah – this isn’t exactly a club we signed up for, is it? If you’re anything like I was post-diagnosis, you’re probably toggling between WebMD and “how to pronounce demyelination” videos at 3 AM. (Pro tip: It’s de-my-eli-nation. You’re welcome.) Alright, let’s talk about the stuff your neurologist probably glossed over. When I was diagnosed, all I got was the news that I had MS and the date for my first treatment. That was it—and it clearly wasn’t enough. That’s why I’m writing this post, hoping to make things a bit easier for others. The Emotional Whiplash of MS BAM! You just got diagnosed with MS. Suddenly overwhelmed by a thousand feelings at once? Relief at finally getting answers to your symptoms? Fear of MS? What even is MS? Am I going to die? Can I still have kids? What happens now? Will people still love me? And again, what the hell is MS? You know what? Let’s try to answer those questions now:Relief at finally getting answers to your symptoms?Yeah, it’s a weird relief, right? It sucks that it’s MS, but at least now you know what you’re dealing with. It’s okay to feel both relieved and pissed off about it at the same time. Fear of MS?Fear makes total sense. MS is a lot to take in, and the unknowns are terrifying. You don’t have to pretend you’re okay with it. Take the time to feel whatever you need to feel. What even is MS?MS is your immune system going rogue and attacking the coating around your nerves. It’s unpredictable and can mess with you in different ways. The truth is, it’s complicated, and you’re not going to figure it all out right away. Am I going to die?MS isn’t a death sentence, but it’s serious. No sugarcoating here—it’s something you’ll have to manage. But focusing on what you can control might help take the edge off that fear. Can I still have kids?Yes, you can still have kids. MS doesn’t take that option off the table, but it might add some extra considerations. Talk to your doctor and figure out what that looks like for you. What happens now?Now, it’s about figuring out what your new normal is. There’s no one-size-fits-all answer. You’ll probably need to try different treatments, make some lifestyle changes, and adjust as you go. It’s messy, and it’s not going to be easy, but you’ll find your way. Will people still love me?The people who matter will stick around, but don’t be surprised if some don’t know how to handle it. It might be awkward, and some relationships might change, but the ones worth keeping will adjust. And again, what the hell is MS?MS is a pain in the ass, and it’s going to throw things at you that you won’t see coming. It’s okay to be angry, confused, and overwhelmed. You don’t have to have it all figured out right now. Just take it one step at a time, and don’t be afraid to call bullshit when things don’t make sense. Illustration by Ani Castillo. Did that help? Probably not. What they don’t tell you is that grief comes in waves. You might be fine for weeks, then suddenly burst into tears in the grocery store because you can’t open a jar. It’s normal. You’re mourning the life you thought you’d have. But here’s the thing – you’ll also experience moments of unexpected joy and gratitude. MS does have a silly way of making you appreciate the small things in life, eventually. The Medical Maze When I first dove into my MS Google frenzy, it didn’t take long to realize that medication is a hot topic in the MS community. Some people refuse to take any meds at all, while others stick to a treatment plan even though their MS is mild and their doctor says they might not need it. You’re going to read about all kinds of experiences, and it’s going to mess with your head. I’ve been there. When I posted about a certain medication, I got flooded with comments about how it ruined people’s lives, and suddenly, I didn’t know what to do anymore. Was my doctor right? Was I an idiot for not getting a second opinion? If you’re feeling overwhelmed right now, take a deep breath. Your MS specialist is likely up to date with the latest research and treatments that are tailored to your specific type of MS. They know your symptoms, lesions, blood test results, MRI scans—everything that no one on the internet can fully grasp about you. But your doctor does. That said, it’s crucial to advocate for yourself. If you ever feel like your concerns aren’t being taken seriously, don’t hesitate to speak up. It’s your body, your life, and you deserve to be heard. Sometimes, finding a doctor who really listens and respects your input makes all the difference. While it’s important not to let other people’s experiences dictate your choices, connecting with others who have MS can still offer support and different perspectives. Just remember to filter that advice through the lens of your own situation—and always discuss it with your doctor. And be prepared—you’re about to get a crash course in becoming a part-time pharmacist. You’ll learn more about immunosuppressants and other meds than you ever wanted to know. Finding the right treatment can feel like a frustrating game of trial and error. My friend went through three different medications before finding one that didn’t make him feel like a zombie or come with weird side effects. Pro tip: Keep a symptom diary. It’ll save you from playing “Is it MS or is it the meds?” every other day. The Invisible Symptoms Here’s the truth they don’t put in those glossy MS pamphlets: the invisible symptoms can be the toughest to deal with. Fatigue isn’t just feeling tired—it’s like your body has suddenly turned into a dead weight, making even the simplest tasks feel impossible. Cognitive fog? Brace yourself for days when remembering your own phone number just won’t happen. Then there’s the pain. MS can bring on strange sensations that are hard to put into words—burning, tingling, electric shocks. It can feel like your body is hosting a nonstop party, and you weren’t invited. You might look completely fine on the outside, which leads to those frustrating “but you don’t look sick” comments when you need to sit down on a crowded bus or train because your balance is off and you’re worried you might fall. It’s a tough situation, but understanding these invisible symptoms can help you advocate for yourself and explain what you’re going through to others. So what should you do? Well, these invisible symptoms take patience and self-compassion. It’s important to find ways to manage them that work for you, whether that’s through rest, relaxation techniques, or support from others who get it. You’re learning how to live with MS, and it’s okay to take things one step at a time. The Bathroom Saga Yep, we’re going there—your bladder might become your new frenemy. You might deal with urgency, frequency, and those oh-so-embarrassing leaks. Even if this isn’t on your radar right now, it’s worth knowing these issues could pop up. If they do, recognizing them as potential MS-related problems might help you find some relief. I’ve had my own mishaps—like the time I had to make a sprint out of a dressing room because my bladder decided it was time without any warning. Not exactly my finest hour, but hey, I made it to the bathroom! And it doesn’t stop with your bladder. Constipation can also become a real pain in the… well, you get it. Make sure to stock up on fiber and stay hydrated. Your gut will thank you, even if it takes a little while for it to come around. The Sex and Relationship Complexities MS can mess with sensation, cause fatigue, and generally make intimacy… interesting. The right person will stick around, and the wrong ones? Well, they’re doing you a favor by showing their true colors early. Here’s what they don’t tell you: MS can affect your libido and sexual function. It’s not just about physical changes; the emotional toll can impact your sex life too. Communication with your partner is key. And don’t be embarrassed to talk to your doctor about sexual issues – they’ve heard it all before. Let them help you! The Career Challenges Fatigue is real, and it can hit you hard. I know someone who had to have some awkward conversations with their boss about flexible working hours and taking breaks. It was uncomfortable, but necessary. Know your rights, and don’t be afraid to ask for accommodations if you need them.What they don’t mention is the internal struggle of whether to disclose your MS at work. There’s no one-size-fits-all answer. I chose to be open about it, and you can read about my experience here. But I know others who’ve kept it private. Whatever you decide, just make sure you’re taking care of yourself first. Let’s Talk Money MS can be a serious financial burden when you’ve been recently diagnosed with MS. Even with insurance, costs can pile up quickly, from medications and doctor visits to unexpected expenses. For those in countries where state or government healthcare isn’t fully covered, or where additional costs aren’t subsidized, this can be especially challenging. Start looking into assistance programs as early as possible to help manage these costs. And here’s a practical tip: keep every single medical receipt you get. You might be eligible for tax deductions or reimbursements you weren’t aware of. Tracking these expenses diligently can make a significant difference in easing the financial strain. If you’re in a country with robust healthcare support, make sure to understand how to maximize those resources to your advantage. The Diet Questions You’ll find that everyone has a strong opinion on what you should eat for MS. Paleo, keto, vegan—there’s no shortage of diet fads claiming they’ve cured MS. The reality is, there’s no universal diet that works for everyone with MS. What benefits one person might not be effective for you. Pay attention to how different foods make you feel and consider consulting with a nutritionist who can help tailor a plan to your specific needs and symptoms. Your body is the best guide in figuring out what works for you. The Temperature Troubles Heat sensitivity is real, and it can make summer your worst enemy. To keep your cool, try investing in some cooling gear like personal fans or cooling vests. They might make you look like you’re about to conduct an experiment, but they really do help. Hydration is key — drink plenty of water to keep your body temperature from going haywire. Make your space more bearable with fans or air conditioning. If you can’t chill at home, seek out air-conditioned places to take refuge. Wear lightweight, breathable clothing to avoid feeling like you’re in a sauna. When things heat up, use cool, damp cloths on your neck and wrists, or take a refreshing cool shower. Cold sensitivity can be just as tricky. Ever had your hand go numb from holding a cold drink? Welcome to the club. To handle this, try keeping your hands warm with insulated gloves or warm packs. It’s all about finding what helps you stay comfortable, so you can get through those temperature extremes without too much trouble. The Pregnancy Considerations So, you’re thinking about having kids and wondering how MS might fit into the picture. The good news? Many people with MS have perfectly healthy pregnancies. The not-so-great news? You might need to take a break from your meds, and there’s a chance of postpartum flare-ups. It’s definitely manageable, but it does require some extra planning and close monitoring. Make sure to have an in-depth chat with your doctor to get a game plan that works for you. The Mental Health Aspects Depression and anxiety are common with MS, but they’re not just a reaction to the diagnosis. MS can actually cause changes in your brain that contribute to mood disorders. Don’t tough it out alone – therapy and medication will and can help you. If you’re looking for more on how MS affects mental health and practical tips for managing it, check out my article here. It’s packed with insights and advice on navigating these challenges with a bit of humor and a lot of honesty. The Social Life Changes Your social life might change. Some friends might drift away (good riddance to them), while others will step up in ways you never expected. You might find yourself gravitating towards other people with chronic illnesses who “get it.” That’s okay. Quality over quantity when it comes to friendships. The Weird and Wonderful World of MS Symptoms Get ready for some strange symptoms that’ll make you go “Is this MS or am I just weird?” Suddenly hate the taste of your favorite food? MS might be messing with your taste buds. Feel like you’re being hugged too tight? Hello, MS hug (yes, it’s a real thing). The variety of symptoms can be mind-boggling, but remember – not everyone experiences all of them. The Future Thoughts Let’s talk about the big worries – fear of the future. Will I end up in a wheelchair? Will I be able to have kids? Will I be a burden on my family? These thoughts are normal, but don’t let them consume you. MS is unpredictable, sure, but so is life in general. I’ve learned to plan for the future while still living in the present. Set goals, chase dreams, but also give yourself permission to adjust those plans as needed. Illustration by Adam JK The Unexpected Good Stuff This might sound crazy, but MS has brought some positive changes to my life. I’ve become more assertive, more in tune with my body, and more appreciative of the good days. I’ve met incredible people through support groups and advocacy work. Don’t get me wrong – I’d still cure my MS in a heartbeat if I could. But finding the silver linings has helped me cope. If you’re curious about how I discovered a new version of myself after my diagnosis, you can read about it here. So yeah… MS is different for everyone. Some days you’ll feel like you’ve got this, other days you’ll want to hide under the covers. Both are okay. Be kind to yourself, advocate for your needs, and don’t lose your sense of humor. After all, if we can’t laugh at the absurdity of our own malfunctioning nervous systems, what can we laugh at?
333 Newly diagnosed with MS? Welcome to MS 101 – the stuff they forget to tell you. Well, hello there, fellow new MS club member. I’d say “welcome,” but yeah – this isn’t exactly a club we signed up for, is it? If you’re anything like I was post-diagnosis, you’re probably toggling between WebMD and “how to pronounce demyelination” videos at 3 AM. (Pro tip: It’s de-my-eli-nation. You’re welcome.) Alright, let’s talk about the stuff your neurologist probably glossed over. When I was diagnosed, all I got was the news that I had MS and the date for my first treatment. That was it—and it clearly wasn’t enough. That’s why I’m writing this post, hoping to make things a bit easier for others. The Emotional Whiplash of MS BAM! You just got diagnosed with MS. Suddenly overwhelmed by a thousand feelings at once? Relief at finally getting answers to your symptoms? Fear of MS? What even is MS? Am I going to die? Can I still have kids? What happens now? Will people still love me? And again, what the hell is MS? You know what? Let’s try to answer those questions now:Relief at finally getting answers to your symptoms?Yeah, it’s a weird relief, right? It sucks that it’s MS, but at least now you know what you’re dealing with. It’s okay to feel both relieved and pissed off about it at the same time. Fear of MS?Fear makes total sense. MS is a lot to take in, and the unknowns are terrifying. You don’t have to pretend you’re okay with it. Take the time to feel whatever you need to feel. What even is MS?MS is your immune system going rogue and attacking the coating around your nerves. It’s unpredictable and can mess with you in different ways. The truth is, it’s complicated, and you’re not going to figure it all out right away. Am I going to die?MS isn’t a death sentence, but it’s serious. No sugarcoating here—it’s something you’ll have to manage. But focusing on what you can control might help take the edge off that fear. Can I still have kids?Yes, you can still have kids. MS doesn’t take that option off the table, but it might add some extra considerations. Talk to your doctor and figure out what that looks like for you. What happens now?Now, it’s about figuring out what your new normal is. There’s no one-size-fits-all answer. You’ll probably need to try different treatments, make some lifestyle changes, and adjust as you go. It’s messy, and it’s not going to be easy, but you’ll find your way. Will people still love me?The people who matter will stick around, but don’t be surprised if some don’t know how to handle it. It might be awkward, and some relationships might change, but the ones worth keeping will adjust. And again, what the hell is MS?MS is a pain in the ass, and it’s going to throw things at you that you won’t see coming. It’s okay to be angry, confused, and overwhelmed. You don’t have to have it all figured out right now. Just take it one step at a time, and don’t be afraid to call bullshit when things don’t make sense. Illustration by Ani Castillo. Did that help? Probably not. What they don’t tell you is that grief comes in waves. You might be fine for weeks, then suddenly burst into tears in the grocery store because you can’t open a jar. It’s normal. You’re mourning the life you thought you’d have. But here’s the thing – you’ll also experience moments of unexpected joy and gratitude. MS does have a silly way of making you appreciate the small things in life, eventually. The Medical Maze When I first dove into my MS Google frenzy, it didn’t take long to realize that medication is a hot topic in the MS community. Some people refuse to take any meds at all, while others stick to a treatment plan even though their MS is mild and their doctor says they might not need it. You’re going to read about all kinds of experiences, and it’s going to mess with your head. I’ve been there. When I posted about a certain medication, I got flooded with comments about how it ruined people’s lives, and suddenly, I didn’t know what to do anymore. Was my doctor right? Was I an idiot for not getting a second opinion? If you’re feeling overwhelmed right now, take a deep breath. Your MS specialist is likely up to date with the latest research and treatments that are tailored to your specific type of MS. They know your symptoms, lesions, blood test results, MRI scans—everything that no one on the internet can fully grasp about you. But your doctor does. That said, it’s crucial to advocate for yourself. If you ever feel like your concerns aren’t being taken seriously, don’t hesitate to speak up. It’s your body, your life, and you deserve to be heard. Sometimes, finding a doctor who really listens and respects your input makes all the difference. While it’s important not to let other people’s experiences dictate your choices, connecting with others who have MS can still offer support and different perspectives. Just remember to filter that advice through the lens of your own situation—and always discuss it with your doctor. And be prepared—you’re about to get a crash course in becoming a part-time pharmacist. You’ll learn more about immunosuppressants and other meds than you ever wanted to know. Finding the right treatment can feel like a frustrating game of trial and error. My friend went through three different medications before finding one that didn’t make him feel like a zombie or come with weird side effects. Pro tip: Keep a symptom diary. It’ll save you from playing “Is it MS or is it the meds?” every other day. The Invisible Symptoms Here’s the truth they don’t put in those glossy MS pamphlets: the invisible symptoms can be the toughest to deal with. Fatigue isn’t just feeling tired—it’s like your body has suddenly turned into a dead weight, making even the simplest tasks feel impossible. Cognitive fog? Brace yourself for days when remembering your own phone number just won’t happen. Then there’s the pain. MS can bring on strange sensations that are hard to put into words—burning, tingling, electric shocks. It can feel like your body is hosting a nonstop party, and you weren’t invited. You might look completely fine on the outside, which leads to those frustrating “but you don’t look sick” comments when you need to sit down on a crowded bus or train because your balance is off and you’re worried you might fall. It’s a tough situation, but understanding these invisible symptoms can help you advocate for yourself and explain what you’re going through to others. So what should you do? Well, these invisible symptoms take patience and self-compassion. It’s important to find ways to manage them that work for you, whether that’s through rest, relaxation techniques, or support from others who get it. You’re learning how to live with MS, and it’s okay to take things one step at a time. The Bathroom Saga Yep, we’re going there—your bladder might become your new frenemy. You might deal with urgency, frequency, and those oh-so-embarrassing leaks. Even if this isn’t on your radar right now, it’s worth knowing these issues could pop up. If they do, recognizing them as potential MS-related problems might help you find some relief. I’ve had my own mishaps—like the time I had to make a sprint out of a dressing room because my bladder decided it was time without any warning. Not exactly my finest hour, but hey, I made it to the bathroom! And it doesn’t stop with your bladder. Constipation can also become a real pain in the… well, you get it. Make sure to stock up on fiber and stay hydrated. Your gut will thank you, even if it takes a little while for it to come around. The Sex and Relationship Complexities MS can mess with sensation, cause fatigue, and generally make intimacy… interesting. The right person will stick around, and the wrong ones? Well, they’re doing you a favor by showing their true colors early. Here’s what they don’t tell you: MS can affect your libido and sexual function. It’s not just about physical changes; the emotional toll can impact your sex life too. Communication with your partner is key. And don’t be embarrassed to talk to your doctor about sexual issues – they’ve heard it all before. Let them help you! The Career Challenges Fatigue is real, and it can hit you hard. I know someone who had to have some awkward conversations with their boss about flexible working hours and taking breaks. It was uncomfortable, but necessary. Know your rights, and don’t be afraid to ask for accommodations if you need them.What they don’t mention is the internal struggle of whether to disclose your MS at work. There’s no one-size-fits-all answer. I chose to be open about it, and you can read about my experience here. But I know others who’ve kept it private. Whatever you decide, just make sure you’re taking care of yourself first. Let’s Talk Money MS can be a serious financial burden when you’ve been recently diagnosed with MS. Even with insurance, costs can pile up quickly, from medications and doctor visits to unexpected expenses. For those in countries where state or government healthcare isn’t fully covered, or where additional costs aren’t subsidized, this can be especially challenging. Start looking into assistance programs as early as possible to help manage these costs. And here’s a practical tip: keep every single medical receipt you get. You might be eligible for tax deductions or reimbursements you weren’t aware of. Tracking these expenses diligently can make a significant difference in easing the financial strain. If you’re in a country with robust healthcare support, make sure to understand how to maximize those resources to your advantage. The Diet Questions You’ll find that everyone has a strong opinion on what you should eat for MS. Paleo, keto, vegan—there’s no shortage of diet fads claiming they’ve cured MS. The reality is, there’s no universal diet that works for everyone with MS. What benefits one person might not be effective for you. Pay attention to how different foods make you feel and consider consulting with a nutritionist who can help tailor a plan to your specific needs and symptoms. Your body is the best guide in figuring out what works for you. The Temperature Troubles Heat sensitivity is real, and it can make summer your worst enemy. To keep your cool, try investing in some cooling gear like personal fans or cooling vests. They might make you look like you’re about to conduct an experiment, but they really do help. Hydration is key — drink plenty of water to keep your body temperature from going haywire. Make your space more bearable with fans or air conditioning. If you can’t chill at home, seek out air-conditioned places to take refuge. Wear lightweight, breathable clothing to avoid feeling like you’re in a sauna. When things heat up, use cool, damp cloths on your neck and wrists, or take a refreshing cool shower. Cold sensitivity can be just as tricky. Ever had your hand go numb from holding a cold drink? Welcome to the club. To handle this, try keeping your hands warm with insulated gloves or warm packs. It’s all about finding what helps you stay comfortable, so you can get through those temperature extremes without too much trouble. The Pregnancy Considerations So, you’re thinking about having kids and wondering how MS might fit into the picture. The good news? Many people with MS have perfectly healthy pregnancies. The not-so-great news? You might need to take a break from your meds, and there’s a chance of postpartum flare-ups. It’s definitely manageable, but it does require some extra planning and close monitoring. Make sure to have an in-depth chat with your doctor to get a game plan that works for you. The Mental Health Aspects Depression and anxiety are common with MS, but they’re not just a reaction to the diagnosis. MS can actually cause changes in your brain that contribute to mood disorders. Don’t tough it out alone – therapy and medication will and can help you. If you’re looking for more on how MS affects mental health and practical tips for managing it, check out my article here. It’s packed with insights and advice on navigating these challenges with a bit of humor and a lot of honesty. The Social Life Changes Your social life might change. Some friends might drift away (good riddance to them), while others will step up in ways you never expected. You might find yourself gravitating towards other people with chronic illnesses who “get it.” That’s okay. Quality over quantity when it comes to friendships. The Weird and Wonderful World of MS Symptoms Get ready for some strange symptoms that’ll make you go “Is this MS or am I just weird?” Suddenly hate the taste of your favorite food? MS might be messing with your taste buds. Feel like you’re being hugged too tight? Hello, MS hug (yes, it’s a real thing). The variety of symptoms can be mind-boggling, but remember – not everyone experiences all of them. The Future Thoughts Let’s talk about the big worries – fear of the future. Will I end up in a wheelchair? Will I be able to have kids? Will I be a burden on my family? These thoughts are normal, but don’t let them consume you. MS is unpredictable, sure, but so is life in general. I’ve learned to plan for the future while still living in the present. Set goals, chase dreams, but also give yourself permission to adjust those plans as needed. Illustration by Adam JK The Unexpected Good Stuff This might sound crazy, but MS has brought some positive changes to my life. I’ve become more assertive, more in tune with my body, and more appreciative of the good days. I’ve met incredible people through support groups and advocacy work. Don’t get me wrong – I’d still cure my MS in a heartbeat if I could. But finding the silver linings has helped me cope. If you’re curious about how I discovered a new version of myself after my diagnosis, you can read about it here. So yeah… MS is different for everyone. Some days you’ll feel like you’ve got this, other days you’ll want to hide under the covers. Both are okay. Be kind to yourself, advocate for your needs, and don’t lose your sense of humor. After all, if we can’t laugh at the absurdity of our own malfunctioning nervous systems, what can we laugh at?
333 Newly diagnosed with MS? Welcome to MS 101 – the stuff they forget to tell you. Well, hello there, fellow new MS club member. I’d say “welcome,” but yeah – this isn’t exactly a club we signed up for, is it? If you’re anything like I was post-diagnosis, you’re probably toggling between WebMD and “how to pronounce demyelination” videos at 3 AM. (Pro tip: It’s de-my-eli-nation. You’re welcome.) Alright, let’s talk about the stuff your neurologist probably glossed over. When I was diagnosed, all I got was the news that I had MS and the date for my first treatment. That was it—and it clearly wasn’t enough. That’s why I’m writing this post, hoping to make things a bit easier for others. The Emotional Whiplash of MS BAM! You just got diagnosed with MS. Suddenly overwhelmed by a thousand feelings at once? Relief at finally getting answers to your symptoms? Fear of MS? What even is MS? Am I going to die? Can I still have kids? What happens now? Will people still love me? And again, what the hell is MS? You know what? Let’s try to answer those questions now:Relief at finally getting answers to your symptoms?Yeah, it’s a weird relief, right? It sucks that it’s MS, but at least now you know what you’re dealing with. It’s okay to feel both relieved and pissed off about it at the same time. Fear of MS?Fear makes total sense. MS is a lot to take in, and the unknowns are terrifying. You don’t have to pretend you’re okay with it. Take the time to feel whatever you need to feel. What even is MS?MS is your immune system going rogue and attacking the coating around your nerves. It’s unpredictable and can mess with you in different ways. The truth is, it’s complicated, and you’re not going to figure it all out right away. Am I going to die?MS isn’t a death sentence, but it’s serious. No sugarcoating here—it’s something you’ll have to manage. But focusing on what you can control might help take the edge off that fear. Can I still have kids?Yes, you can still have kids. MS doesn’t take that option off the table, but it might add some extra considerations. Talk to your doctor and figure out what that looks like for you. What happens now?Now, it’s about figuring out what your new normal is. There’s no one-size-fits-all answer. You’ll probably need to try different treatments, make some lifestyle changes, and adjust as you go. It’s messy, and it’s not going to be easy, but you’ll find your way. Will people still love me?The people who matter will stick around, but don’t be surprised if some don’t know how to handle it. It might be awkward, and some relationships might change, but the ones worth keeping will adjust. And again, what the hell is MS?MS is a pain in the ass, and it’s going to throw things at you that you won’t see coming. It’s okay to be angry, confused, and overwhelmed. You don’t have to have it all figured out right now. Just take it one step at a time, and don’t be afraid to call bullshit when things don’t make sense. Illustration by Ani Castillo. Did that help? Probably not. What they don’t tell you is that grief comes in waves. You might be fine for weeks, then suddenly burst into tears in the grocery store because you can’t open a jar. It’s normal. You’re mourning the life you thought you’d have. But here’s the thing – you’ll also experience moments of unexpected joy and gratitude. MS does have a silly way of making you appreciate the small things in life, eventually. The Medical Maze When I first dove into my MS Google frenzy, it didn’t take long to realize that medication is a hot topic in the MS community. Some people refuse to take any meds at all, while others stick to a treatment plan even though their MS is mild and their doctor says they might not need it. You’re going to read about all kinds of experiences, and it’s going to mess with your head. I’ve been there. When I posted about a certain medication, I got flooded with comments about how it ruined people’s lives, and suddenly, I didn’t know what to do anymore. Was my doctor right? Was I an idiot for not getting a second opinion? If you’re feeling overwhelmed right now, take a deep breath. Your MS specialist is likely up to date with the latest research and treatments that are tailored to your specific type of MS. They know your symptoms, lesions, blood test results, MRI scans—everything that no one on the internet can fully grasp about you. But your doctor does. That said, it’s crucial to advocate for yourself. If you ever feel like your concerns aren’t being taken seriously, don’t hesitate to speak up. It’s your body, your life, and you deserve to be heard. Sometimes, finding a doctor who really listens and respects your input makes all the difference. While it’s important not to let other people’s experiences dictate your choices, connecting with others who have MS can still offer support and different perspectives. Just remember to filter that advice through the lens of your own situation—and always discuss it with your doctor. And be prepared—you’re about to get a crash course in becoming a part-time pharmacist. You’ll learn more about immunosuppressants and other meds than you ever wanted to know. Finding the right treatment can feel like a frustrating game of trial and error. My friend went through three different medications before finding one that didn’t make him feel like a zombie or come with weird side effects. Pro tip: Keep a symptom diary. It’ll save you from playing “Is it MS or is it the meds?” every other day. The Invisible Symptoms Here’s the truth they don’t put in those glossy MS pamphlets: the invisible symptoms can be the toughest to deal with. Fatigue isn’t just feeling tired—it’s like your body has suddenly turned into a dead weight, making even the simplest tasks feel impossible. Cognitive fog? Brace yourself for days when remembering your own phone number just won’t happen. Then there’s the pain. MS can bring on strange sensations that are hard to put into words—burning, tingling, electric shocks. It can feel like your body is hosting a nonstop party, and you weren’t invited. You might look completely fine on the outside, which leads to those frustrating “but you don’t look sick” comments when you need to sit down on a crowded bus or train because your balance is off and you’re worried you might fall. It’s a tough situation, but understanding these invisible symptoms can help you advocate for yourself and explain what you’re going through to others. So what should you do? Well, these invisible symptoms take patience and self-compassion. It’s important to find ways to manage them that work for you, whether that’s through rest, relaxation techniques, or support from others who get it. You’re learning how to live with MS, and it’s okay to take things one step at a time. The Bathroom Saga Yep, we’re going there—your bladder might become your new frenemy. You might deal with urgency, frequency, and those oh-so-embarrassing leaks. Even if this isn’t on your radar right now, it’s worth knowing these issues could pop up. If they do, recognizing them as potential MS-related problems might help you find some relief. I’ve had my own mishaps—like the time I had to make a sprint out of a dressing room because my bladder decided it was time without any warning. Not exactly my finest hour, but hey, I made it to the bathroom! And it doesn’t stop with your bladder. Constipation can also become a real pain in the… well, you get it. Make sure to stock up on fiber and stay hydrated. Your gut will thank you, even if it takes a little while for it to come around. The Sex and Relationship Complexities MS can mess with sensation, cause fatigue, and generally make intimacy… interesting. The right person will stick around, and the wrong ones? Well, they’re doing you a favor by showing their true colors early. Here’s what they don’t tell you: MS can affect your libido and sexual function. It’s not just about physical changes; the emotional toll can impact your sex life too. Communication with your partner is key. And don’t be embarrassed to talk to your doctor about sexual issues – they’ve heard it all before. Let them help you! The Career Challenges Fatigue is real, and it can hit you hard. I know someone who had to have some awkward conversations with their boss about flexible working hours and taking breaks. It was uncomfortable, but necessary. Know your rights, and don’t be afraid to ask for accommodations if you need them.What they don’t mention is the internal struggle of whether to disclose your MS at work. There’s no one-size-fits-all answer. I chose to be open about it, and you can read about my experience here. But I know others who’ve kept it private. Whatever you decide, just make sure you’re taking care of yourself first. Let’s Talk Money MS can be a serious financial burden when you’ve been recently diagnosed with MS. Even with insurance, costs can pile up quickly, from medications and doctor visits to unexpected expenses. For those in countries where state or government healthcare isn’t fully covered, or where additional costs aren’t subsidized, this can be especially challenging. Start looking into assistance programs as early as possible to help manage these costs. And here’s a practical tip: keep every single medical receipt you get. You might be eligible for tax deductions or reimbursements you weren’t aware of. Tracking these expenses diligently can make a significant difference in easing the financial strain. If you’re in a country with robust healthcare support, make sure to understand how to maximize those resources to your advantage. The Diet Questions You’ll find that everyone has a strong opinion on what you should eat for MS. Paleo, keto, vegan—there’s no shortage of diet fads claiming they’ve cured MS. The reality is, there’s no universal diet that works for everyone with MS. What benefits one person might not be effective for you. Pay attention to how different foods make you feel and consider consulting with a nutritionist who can help tailor a plan to your specific needs and symptoms. Your body is the best guide in figuring out what works for you. The Temperature Troubles Heat sensitivity is real, and it can make summer your worst enemy. To keep your cool, try investing in some cooling gear like personal fans or cooling vests. They might make you look like you’re about to conduct an experiment, but they really do help. Hydration is key — drink plenty of water to keep your body temperature from going haywire. Make your space more bearable with fans or air conditioning. If you can’t chill at home, seek out air-conditioned places to take refuge. Wear lightweight, breathable clothing to avoid feeling like you’re in a sauna. When things heat up, use cool, damp cloths on your neck and wrists, or take a refreshing cool shower. Cold sensitivity can be just as tricky. Ever had your hand go numb from holding a cold drink? Welcome to the club. To handle this, try keeping your hands warm with insulated gloves or warm packs. It’s all about finding what helps you stay comfortable, so you can get through those temperature extremes without too much trouble. The Pregnancy Considerations So, you’re thinking about having kids and wondering how MS might fit into the picture. The good news? Many people with MS have perfectly healthy pregnancies. The not-so-great news? You might need to take a break from your meds, and there’s a chance of postpartum flare-ups. It’s definitely manageable, but it does require some extra planning and close monitoring. Make sure to have an in-depth chat with your doctor to get a game plan that works for you. The Mental Health Aspects Depression and anxiety are common with MS, but they’re not just a reaction to the diagnosis. MS can actually cause changes in your brain that contribute to mood disorders. Don’t tough it out alone – therapy and medication will and can help you. If you’re looking for more on how MS affects mental health and practical tips for managing it, check out my article here. It’s packed with insights and advice on navigating these challenges with a bit of humor and a lot of honesty. The Social Life Changes Your social life might change. Some friends might drift away (good riddance to them), while others will step up in ways you never expected. You might find yourself gravitating towards other people with chronic illnesses who “get it.” That’s okay. Quality over quantity when it comes to friendships. The Weird and Wonderful World of MS Symptoms Get ready for some strange symptoms that’ll make you go “Is this MS or am I just weird?” Suddenly hate the taste of your favorite food? MS might be messing with your taste buds. Feel like you’re being hugged too tight? Hello, MS hug (yes, it’s a real thing). The variety of symptoms can be mind-boggling, but remember – not everyone experiences all of them. The Future Thoughts Let’s talk about the big worries – fear of the future. Will I end up in a wheelchair? Will I be able to have kids? Will I be a burden on my family? These thoughts are normal, but don’t let them consume you. MS is unpredictable, sure, but so is life in general. I’ve learned to plan for the future while still living in the present. Set goals, chase dreams, but also give yourself permission to adjust those plans as needed. Illustration by Adam JK The Unexpected Good Stuff This might sound crazy, but MS has brought some positive changes to my life. I’ve become more assertive, more in tune with my body, and more appreciative of the good days. I’ve met incredible people through support groups and advocacy work. Don’t get me wrong – I’d still cure my MS in a heartbeat if I could. But finding the silver linings has helped me cope. If you’re curious about how I discovered a new version of myself after my diagnosis, you can read about it here. So yeah… MS is different for everyone. Some days you’ll feel like you’ve got this, other days you’ll want to hide under the covers. Both are okay. Be kind to yourself, advocate for your needs, and don’t lose your sense of humor. After all, if we can’t laugh at the absurdity of our own malfunctioning nervous systems, what can we laugh at?