Multiple Sclerosis: Joyful Living Guide - Healthy Lifestyle and Brain Health

30 May, 2026 Guests Interviews and Charity events

World MS Day: Letting Go of Guilt, Social Media Myths, and Practicing Self-Compassion

On World MS Day, Dr. Agne Straukiene hosts BeeWellwithMS and speaks with Helena Jidborg Alexander, host of the MS Trust podcast, about the often-invisible burden of guilt and self-blame in multiple sclerosis. They discuss how people with MS may blame stress, lifestyle, diet, or effort for relapses and new lesions despite not knowing what causes MS, and how social media “cures,” restrictive wellness trends, and misinformation can worsen anxiety and costs. Helena shares her experience of stable years followed by new lesions, how documenting patterns, running, and seasonal awareness helped her manage MS symptoms, and how CBT tools (like addressing catastrophizing and the “worry tree”) improved sleep and self-talk.

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Hello, and welcome to Be Well with MS. I'm doctor Agnes Strogena, consultant neurologist and host of Be Well with MS podcast. Today is World MS Day. For me, this is not so much a day of celebration as it is this day of awareness, understanding, and education. Multiple sclerosis affects millions of people worldwide. It impacts careers, relationships, families, dreams, and everyday life. Yet despite all the advances in research and treatment, many people living with MS still carry invisible burdens that are rarely discussed. One of those burdens is guilt. In clinic, I occasionally hear patients ask, did stress cause this? Did I work too hard? Did I eat the wrong foods? Could I have prevented this relapse? Did I somehow cause these new lesions? These questions come from a very human place. When something difficult happens, we naturally search for explanations. We want certainty. We want control. And in the world full of social media advice, miracle stories, wellness trends, herbs, and strong opinions, it can sometimes feel as though if we just lived perfectly, MS would somehow behave perfectly too. But life and MS are rarely that simple. Today, I'm delighted to be joined by someone many of you will know and admire. Helena is the host of the MS Trust podcast, passionate advocate within the MS community, and most importantly, someone who lives with MS herself. MS Trust podcast is one of the famous podcast in MS world. Today, we are going to have an honest conversation about self blame, uncertainty, social media, and how to be kinder to ourselves. Helena, thank you so much for joining today. Be well with MS podcast. Have you ever found yourself wondering? Did I do something to cause this? Well, thank you so much for having me on, Agne. It's a little bit strange to sit on the other side of the microphone, but I'm very excited to be here and, obviously, talking as myself, as a person with MS instead of just asking the questions. But to answer that question, I think I'm the kind of person who often ends up blaming myself for things. I I was talking to some friends about this before. If somebody walks into me and I was minding my own business, I'm the one who says, sorry. So I I feel like, naturally, I'm always the kind of person who tries to problem solve by saying that I caused a problem. I don't know I don't know really why. I've always been like this. And I think when I had my MS diagnosis, it was I think what you said there at the start is everything is okay uptick around you at the time. So you really kinda want to have a reason for something because it's problem solving. Right? And so you kinda wanna pinpoint it to something like, oh, what's what caused it? And I think, initially, when I first had the diagnosis, I tried to see if there was something else to blame almost because I've known about MS all my life because I grew up with a grandfather who had MS. Right. One of my first project works that I did in school was about MS in sort of biology because of my granddaddy picking. And And then when I went to university and I did my degree in film studies, I did something that also was about propaganda films and things, and specifically on a woman who had MS. Several years later, getting the diagnosis of MS was very strange and very shocking still even though I knew so much about MS. But we still don't know what causes MS, and you just kinda want to have some logic in the chaos. So I think I started thinking, like, what has happened? Have I done something? Have I been poorly? Genetics was definitely something that you start because I'm the kind of person that when something happens, I go online. And in this was back in 2006 when I first my symptoms started happening. So we didn't have all the social media that we have now, but we it was still very much online. We had all the search engines. We had, kinda online communities and all that sort of stuff. So you you even back in those stone age times, I was still online there trying to find the reason for things. Mhmm. But, yeah, I think very much so the first kinda idea was it's probably something that I have done to cause it. And I think that was why it was a good thing with the online world because I did come across a lot of the MS charities, like the MS Trust, but NHS pages as well and things to actually read that, you know, we don't know what causes MS. So at least that sort of calmed me down a little bit straightaway then to know that it wasn't anything that I had done to bring it on. Yeah. Thank you for sharing that. I think many listeners will immediately recognize those feelings. Every elbow person, if not everyone, felt the same. As human beings, we are naturally wired to search for reasons when difficult things happen to us. And sometimes that search gives some answers, but sometimes it gives us guilt. We start blaming ourselves, maybe environment, family, friends, work, you know, colleagues maybe. And guilt can become a very heavy thing to carry on in daily life. So I just wanna touch on the emotional experience. And what does that feeling of responsibility or self blame feel like day to day? Are there any particular moments perhaps after a scan, during a relapse, or when the fatigue becomes overwhelming? When it becomes stronger, there's kind of emotional impacts of blame, self blame day to day. I think, definitely, if there's something new that occurs that you start again, it's that mind going into trying to problem solve what had happened. So I think for many years, I was quite steady with my MS. It was I lived with fatigue. I lived with the sort of same symptoms for a long time. But then in the last two years or so, on the last scans that I've had some new lesions, I had to change my medication. So there were things that was happening. And even though I I feel like I'm quite well established in the world of MS, I have read a lot of research. I have read a lot of maybe a bit more than your average MS patient normally would come across. I'm not saying there will be people who know far more than me that that have MS, but I like to read. I like to keep myself informed. But still my mind went, oh, so I've had these relapses. What have I done? What did I do differently these past two years that I didn't do before? And the answer was, I didn't really do anything differently. Mhmm. I've been still trying to live as healthy as I can. I've been doing trying to eat well. I've been taking my medication, and it still happened. And I think that's when it's hard to not go, but there must be something else. What is there an external factor? Is it this? Is it that? And you spend so much time thinking of this, which actually makes things worse for you, really. You get more stressed, and we all know stress is really bad for MS. You sleep bad. You wake up in the middle of the night and think, oh, what's happened? What's going on? So I felt I became quite anxious around it, and I did have to really take a step back and try to sort of start practicing a bit of self compassion and learn relearn some of the these things that I've learned in the past. And, actually, I think one of the great advice when it comes to self compassion is to try and talk to yourself like you would talk to someone else. A friend of mine would say, oh, I had a relapse. Yeah. What did I do to cause this? I wouldn't say, oh, you did this. You did that. It would just be like, try and focus on getting over the relapse. Focus on feeling better now. Breath, eat well, sleep as much as you can if the relapse happens. So be kind to yourself during that instead of into this spurring of you know, a lot of people go probably on the media, check the forums, check with other people how they felt, how they overcome these. It's good to have that sense of their, community, you know, when something happens to you to get that help. But at the same time, there are some dangers, you know, online and on the media when you are very vulnerable, fragile, and lost feeling lost and blaming yourself and blaming your environment. And then you go and find similar people who are in the same their own shoes experiencing exactly the same, and you have 20 people moaning about the things. So instead of using that energy on, you know, dwelling on the what had happened, perhaps maybe using that energy of, you know, where can you now restore? Where can you find the nourishing good food? And where is there a possibility to have a seven, eight hour sleep to just get some rest? And I guess it's interesting that, you know, we can see lesions on the MRI scan. We can measure walking speed these days. We can measure steps. We can assess the cognition, but we can't see the blame and guilt feeling on MRI scan. We can't objectivize. We can't measure self blame in blood test. So, emotionally, those things can sometimes had a huge impact on our well-being. And how do we respond without reacting and control that feeling, you know? And as you mentioned, Helena, self talk, when you tell the story to yourself, like, the this story becomes a bit more colorful with the facts. And you can say, okay. Done all I could do. You know, it's not my fault. It's you know, we can control the disease with the lifestyle, with the disease modifying therapies, but sometimes we can't entirely control the underlying biology that shifts and changes. So and for that, we can't just turn to ourselves and say, hey. This is my fault. Right? So so I think let's move on to Helena and talk a little bit around how do you personally make sense of what is happening in your MS? Have you ever linked changes in your health to stress, lifestyle, or specific events in your life? How do you sense that, okay. I am okay. Now I'm tired. Now, you know, how do you bring that awareness living with MS? And maybe some people could learn from you. I think it's strange in the way that MS is so up and down. It is a roller coaster. But sometimes you can have it fairly flat as well. Like I said, I was quite stable for many years as well. So I I think a lot of people talk it's after COVID, a lot of people started doing things like journaling and taking a little bit of time and actually thinking about what's going on in your life. I'm really bad at actually sitting down and writing things. I have really horrible handwriting, so I was trying to start doing things like that. And I looked at it and I didn't like what I saw. But I do quite like taking pictures and doing little bit of films and stuff. So I quite often go on Instagram and write. I do a little document of my running. It's mostly to do with my I started running about ten years ago, and I was, like, not a sporty person at all. I really hated peeing school. I was always picked last. I was the one who tried to get out of every doing anything. I ended up ten years ago starting to do a run just because somebody basically convinced me to do a charity run. And we did these, and the program that's called the couch to five k. And I realized that at first, I hated it. I tried it running, and I ran too fast, and it was so tired, and the fatigue was so bad. And then someone said to me, you don't have to sprint running. You can run like you walk. Just you do it as slow as you possibly can run. Yeah. I started doing that. And then after a few weeks, suddenly, my fatigue felt better. And this was, like, ten years into my MS. And I suddenly I'd never felt better for my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my my the coolest thing I've ever put my body through, it felt like, apart from maybe childbirth. I was I had such a runner's high after those kilometers that I had managed to run. I was so surprised that I could put my body through something like that. So I started then doing this little document on Instagram on what I was doing and up and down. And I quite often talk about other things that isn't just running but just my MS and my symptoms. And I find it quite useful then because I can go back and see that there is a bit of a pattern in my MS. So I'm very affected by a bit, but, like, when it's light, like, this time of year, it's very warm. That can make me feel a bit tired. But at the same time, I feel more energized when it's light outside than in the winter when I feel really I always thought that maybe I'm a bear and I should actually go and hibernate during the time. But you can always see then that quite often from November to March, I whine a lot on there saying, oh, I'm so tired. This is really why is this draining me? Why is this coming so now I know, come November, that actually, this is the time where I might want to make sure that I get enough sleep, that I keep on doing what I can do, but also talk to myself a bit kinder because I know I'm gonna be more tired. I know I'm gonna need earlier nights. I know I'm gonna not want to go out and do things, and I need to not feel guilty about that because I just know that this is the way that my MS tend to move. So I think in that way, treating yourself a little bit like a lab rat and documenting what is going on up and down can help you with if you want to problem solve. But then things can still happen and can can surprise you a little bit along the way. But I think that can help to get some some baseline about what is going on with your MS. Knowing yourself, you know, knowing the patterns, identifying the many fluctuation and flare ups from the heat exercise program from certain foods, the spicy foods, heavy foods, organic foods, nonorganic foods, junk foods. And how does that make you feel? And perhaps initially documenting all that and then, you know, usually in our body, there is a pattern. You know, you can identify. And once you've done it, let's say, three months of the documentation and journaling or taking images and being creative or taking some videos of your daily routine, you can see how you felt during that video activity when you try to do this and that. You had that inspired you. Or taking pictures of yourself, you can easily see, oh, in this picture, I'm tired. In this video, I'm super energetic. What made me feel that energetic? And you can maybe write three things if your writing isn't compromised. You can say maybe eight hours sleep, maybe three times a day of food, maybe some fruits during the daytime, maybe some two liters of water that kept me going with for this. So so identifying, and it's individual for everyone, you know, that these kind of plans. And even though we all know that sleep matters, diet matters, exercise matters, whether you're a wheelchair user or you can walk and run, doesn't matter. Exercise can be in a sitting position. So all these things support the brain health and overall well-being. But supporting brain health is very different from causing or preventing every single lesion or relapse or symptom. You can do all these good things to yourself that it's important distinction that even, you know, following these rules, things may still happen to you. But it's not your fault. It's nothing to blame. It's just who you are, and you can't sometimes shift these cells that decide to become aggressive or you develop some opportunistic infection, you know, being immunosuppressed, you still have to live your life and socialize and be around people. And sometimes, you know, you get ill with the infection that that is across, you know, the community and spreads easily via air. But at least you do most of the things right, you know, and never go into these self blame episodes because it's really not your fault. And when things change in your MS, Helena, what kind of thoughts go through your mind? Just share these kind of inner feelings and deeper understandings. You know? What kind of inner dialogue shifted over time? You know? How did you initially responded to the changes and maybe experiencing relapses? And how are you after a year, now a decade, you know, how do you talk to yourself? I think one thing that I have learned is to try and quiet that voice in the back of my head that likes to be a bit too critical at times. I think I quite like I've said a few times, problem solving. Sometimes if I have a long list of things to do, I can feel a bit overwhelmed. But if something falls on my lap and I need to do it straight away, I quite often can handle that. So sometimes when you get a report, say, with a scan saying, oh, this, you got a lesion, that's when my mind goes straight in that, oh, what is going on? What's happening? What have I done? How can I make this better? The mind just goes a bit like, what? Yeah. And I just need to know that, look, this is just a report that came in. Five minutes ago, you were happily working away, and you weren't thinking of this. Nothing has changed just because this report happened to have come in front of you. Yes. Things may change in the future. You might have to switch your medication like I had to or but it's actually it is just words on a piece of paper, and you not just need to take a little step away from it and go, okay. We don't know what's there in the future. Nobody knows. We can't stop this. I think it's interesting what you're saying about we're so good at tracking and we're doing all these things. We I'm very happy running around with my my my watch looking at all the things and looking at my sleep and things. And sometimes I think we can get so stressed by the fact that we're not doing the good. We're not following this. Broke my diet, or I didn't get all my steps in. And we're doing this to optimize. I think everybody's talking about optimization and longevity. And I listened to someone on a reel the other day, and they were saying that people think that this optimization is gonna make them happier and live a longer life. But, actually, we're more disconnected from reality and more unhappy than ever. So, actually, I feel like you need to get the balance right here. We need to do all these things to build a better body, to cope with Emma's progression and all the things that are gonna happen in the future, but we need to have a nice life while we're doing it. We need to have connection with real people. We need to enjoy life. We need to be allowed to eat something that we want to eat. I read something else that was brilliant the other day. It said, eating a meal shouldn't be like taking part in a clinical trial. And I think it's true, isn't it? We want to eat stuff because it's nice and healthy and good for us. But if we do want a piece of cake at one point, we shouldn't feel like, oh my gosh. I've set myself back ten years now. My MS is gonna go absolutely rampant. I'm gonna feel really bad. Because I think we you mentioned at the start about online communities and online voices, and there's a lot of people pushing the the very much that you should restrict yourself, you should do all these things, and that will solve your MS. And it's just the undertones that if you don't follow these things, it is your fault. It's cut out or and they're always so contradictive. Yes. Either, like, you should be a vegan or you should be paleo or you should do that, then you should do this. And it's exhausting. Mhmm. Stress is bad for us. We should just turn off social media. Yeah. And then the cherry on the cake is that, you know, the horrible healer comes on your profile and comments below your picture or video to say, hey. I sold my I cured my MS. You know? This is so wrong. This is do you delete these posts? Do you how do you respond, you know, to these Yeah. Healers of MS? I delete them if they show up in my feed. And at at work, we always get rid of things like that because it is it's disinformation, and we need to fight disinformation online. I think it's so important. And I think this is another thing that I was out for a walk yesterday with a friend of mine who has MS as well, and we were talking about this. Because health professionals and researchers and charities, they're all anchored in research, and it needs to be Evidence based, all these things. So if I would ask you, for instance, say, I don't know, magnesium, you would probably tell me something like, oh, the evidence is this. And anecdotally, people take it and they say it helps with their sleep. But if I go online and I search for this, then suddenly I'm gonna get this in my feed and I'm gonna get this influence. I'm gonna look down the camera and they're gonna say to me, this changed my life. I sleep fantastic now. This changed the life of so many people, and here's a discount code. You can get this and you will sleep better. And, obviously, that's gonna sound so much more direct to me than someone's Having with Florian. The lines. Yeah. Exactly. Tread the lines of being evidence based because we can't say that this is gonna change your life. Yeah. So and I think it it's so difficult to because somebody is bringing you the solution, aren't they? And and then you take it, and then you don't get better. But you don't blame the solution, you blame yourself because you're probably not doing it right. And I think it's this vicious circle It is. Where we just and it can get so expensive as well because people go down the route of all these supplements and things. And I think it's so dangerous. So I really think we need to listen to sense, not listen to influences. And listen to your gut feelings. And, obviously, you know, there are a list of scientific articles around, you know, if you want to dive deeper and understand the evidence. Of course, I'm coming from the medical professional world, and we can't sell products or say about that this is going to be a miracle and solve all your symptoms and problems if it isn't. But we have people who tried the supplements and it really changed their lives, you know. I don't know how much of this is placebo, but I always say to people, look, even if it is a placebo, if it change your quality of life and you really don't respond to the supplement that you take, it's gonna really help and nourish your daily living. I can't tell to other people to do the same thing because maybe there is a no study or research to cover that topic. So but I think, you know, if we're talking about the supplements, it wouldn't harm if somebody is taking vitamin d three, high doses living in the countries that you don't have much of the sunshine. It's not gonna harm if you take omega three. It's nourishing your vessels and improving your your inflammatory processes in the body. It's not gonna harm if you take magnesium, which relaxes your muscles and your your cells that would supply the energy and help you to recover if you exercise, if you've done some other activities that affected and caused some muscle pain. So these things are real. And I think, you know, when you live with MS and long term condition, learning how to talk to yourself, like talking to a friend with a compassion, maybe one of the most important skills you develop or we develop as human beings. So I would like to reframe a little bit and talk about the growth and improvements in our lives and how you found ways to be kinder to yourself when these thoughts come up. You know? How do you talk to yourself? And, you know, we all get these demons in our minds that, oh, you're not good enough. And I listened to you, and I think I would like to work on your confidence, Helena, somehow. This is one professional, you know, who's talking now. So so I just kinda trying to understand your world and yeah. But how you found ways to be kinder to yourself? What helps to let even little small things, you know, of that sense of blame? I think the thing that helped me the most was, when I did CBT. I did, and it's called my severe therapy. Right? Yes. That's right. And I ended up doing it. It was a little bit strange because I have, for many years, struggled with my sleep, and I used to do a thing where I would wake up in the middle of the night, and I would feel like I couldn't breathe. And I thought it was sleep apnea. So I went to IMS nurse and then this got me referred, and I ended up doing a sleep study, which was fine. I don't have sleep apnea. And the doctor said to me, you should do CBT for anxiousness. This is probably what's causing it. It's probably anxiety. For me, I didn't get it in the start because I thought this is such a physiological I mean, it was it was literally like I I couldn't I just felt like out of breath. But I thought, okay. I'm willing to give it a chance because I've read so much good things about it. And I have had other friends who have done it, and they've fully really helped. So did an online course through I got referred via the NHS, so it was also within Hertfordshire where I live. And I liked it because you do get, like, little homework and you get pieces of information that you have to go and think about things. And she put several things in place for me that I should think about. And we talked a lot about catastrophizing. We did talk about confidence, and she did say that to me as well. I need to reflect on my confidence. I need to believe in myself a bit better. But I think for the anxious behavior, to actually note when you're doing things. So for instance, when your mind starts spiraling and you start thinking, oh, what about this? What about this? What about this? They look at something called the worry tree, which I've tried to put in place, like, with with my children when they like to worry about things before bedtime because it's always before bedtime thing where you look at it. We all do that. We all do that. Yeah. When you lay there in the middle of the night and you think, oh, no. I didn't do this. And then it's like, you just have to go, can I do something about it now? No. Because you can't call someone in the middle of the night and talk to them about this. Fine. Go to sleep. Go deal with it in the morning. And it sounds like such a simple thing, but, actually, a lot of the time, I don't think we are aware of when we are catastrophizing or trying to if you're worried about one thing I find guilt often comes with MS is that you feel guilty about that you're letting other people down because you're too tired or you don't have enough energy to play with the kids or you made a very simple dinner, but you actually wanted to make something really nice and elaborate. Or you want to go out on a date, but actually you just end up sitting at home in your pajamas. And I think, again, here, you And it's okay to sit in the pajamas. They're totally okay. There's nothing wrong here. There's nothing wrong. But I think a lot of the time then we mind try to mind read. You try to think about, oh, what's acne thinking when I said we can't do this or we can't but actually, instead of asking you, what do you think about me say saying no? I just try and think about and try and figure out what you're thinking in my mind, and nobody can read anyone's mind. If we could, we would be very rich, wouldn't we? But and so it's just simple things like that that CBT taught me that I actually thinks have made a big difference for me, and I think it calmed myself down a little bit when it comes to having my mind go spiraling. And then, again, come back to the self compassion of actually thinking, come on now. This is silly. Why are you talking to yourself, like, being this harsh? You would not talk to anyone like this. Not even a person you disliked would you talk to for this. Because self compassion isn't giving up. It's not about lowering expectations. It's about recognizing that at the end of the day, we are all human beings doing best we can in the given situation, circumstances we have. And if it is at nighttime that our mind is talking to us to perhaps, you know, talking back to yourself, calming yourself down, or maybe writing things down if you know that you're gonna forget it in the early morning, but you have some tasks to do and your mind is just busy and reminding of these tasks in at 3AM or 4AM. But so take a pencil, a paper, write it down, or take a note and type it on your phone. So in the morning, you're gonna deal with it. But you have to remind yourself that this is nighttime. I need to sleep is important for my brain health and carry on. So okay. I just wanna see, are there things, people, habits, or perspectives that help you feel more grounded and more in control? Where do you go when you feel a bit lost? What do you do? I love taking inspiration from the wider MS community. I think I have met so many amazing people with MS, and there have been people who have you get the superhumans that climb mountains and run marathons and things, but you also get people who are just so grounded in themselves and they know themselves so well. They can talk about their MS and they're we can't be in control over MS, but they learn to live beside it. I think a few different people with MS has said this to me that there's always this kinda, you should battle MS, or you should be a warrior, you should be this. But, actually, that's just exhausting. We should just live next to MS. We can't get rid of MS, but keep on fighting for the rest of our lives. We're gonna get exhausted. We just need to live with it. And I think I had not learned those things if it wasn't for talking to the MS community. And I think, also, sometimes when you have some really strange symptoms that you think, is this just in my head? Is this actually something that's happening to other people? Because even when you talk to health professionals, sometimes they they might not have Google. But you're almost in a big MS community where you can ask, have anybody else felt this? And they'll go, oh, yeah. No. This has definitely happened to me as well. And it just makes you feel like I'm not going crazy. It's this is so I think that's really nice. But then I also think we it's funny because I've worked in the online world. I even met my husband back in the nineties in a music chatroom. So So I've always been very online person. But as I'm getting older, I really value the fact that we need to go outside and we need to meet people in real life. And I think it's so important to have that connection. So like I mentioned before, I went for a walk with a friend of mine who has MS yesterday. And you put the world to right when you walk. Walk and talk, there's something about the movement forwards and think yeah. Nature and everything that just kinda even if you start to walk as feeling a bit pent up and angry or agitated, it just kinda gets out gets it out as you're moving. Yes. Yeah. Part of nature, I think it's healing property. Like, it helps everyone. You know, if you are feeling frustrated, stressed, even if you're a carer, you know, of somebody who lives with MS, go ask spend some minutes, you know, ten minutes, go for a walk, I think, that what Helena is telling us all. But then I also think one thing for me is always if you hear something and you think, well, that sounds interesting, always check it. I think that, like you say, it's so much crazy misinformation out there now. So there are also, luckily, a lot of good sources that you can go for information. So make sure that whatever you hear or whatever you think, check contact the charity or your doctor or your MS nurse or your GP or you may think, I'm guilty of enjoying a little bit of chat with the AI now and again. But if they say something that I think this sounds really good, I do still have to go and click on all the source material to make sure that this is not a hallucination or anything that they're selling me that they're Yes. Too good to be true. Because I think sitting with questions is really bad. No questions are too stupid to ask really, when it comes to your health. And if you are worried about something, you should really talk about it. So I think that is one thing that sort of always makes me feel better when I got something off my heart because I think if you turn the lights and you just walk around, you just become a bit like a hedgehog. It's just and I think finding answers to problems that is is so important. And I think in that way, we're really lucky that we have this amazing online world. We just need to take everything that's said with a bit of pinch of salt. Yeah. And one thing I often tell people is that while we cannot control everything about MS, there is still a great deal we can influence. We can influence how we look after ourselves. You know, waking up in the morning, maybe putting some makeup, brightening your day, putting on more colors. You know? We can also influence how we connect with other people. As Helena just explained, we can also influence how we respond to stresses and challenges in this life. And sometimes focusing on what we can influence is far healthier than blaming ourself for what we cannot change Yeah. Is really important. I I so agree with that because I was thinking of this the other day. There's a lot of talk about elections and things like that. And quite often when you see politicians on TV, they spend all the time somebody asked them a question, but instead of actually giving an answer, they just spend time arguing who caused the problem. But no party actually kinda goes, actually, let's do this to solve it, and I think that's a little bit the same. I try not to argue with my brain about what caused this or what happened. Let's just see what can we do to feel a bit better tomorrow instead. Totally. What would you say to someone with MS who's sitting and thinking, this is my fault. It isn't your fault. We don't know what caused MS. There's so many different factors that's flying around trying to explain what's caused it. And it's not your fault that you have MS, but it's also very understandable that you would end up thinking something like that because, again, it's coming back to that kind of problem solving. But I think it is okay to feel sad. It's okay to have all the feelings. I think it's really important not to push them away either, but go through them, talk to people, and inform yourself, learn about the condition, learn about you, write things down. I think that's one of the things. When it comes to things like supplements and things like that, people can try things. If it's not harmful for you, you know from the doctor that it's okay, do a little experiment and see if it works. If it doesn't make any changes, stop taking it. And I think that's sort of same approach to life. If you if you think that it's your fault, start documenting a little bit what you're doing. And are you pushing too hard at work? Do you need to maybe try and not to do the boom and bust kind of thing? Do you need to work on do you need to do a course in fatigue management? Do you need to do sleep training like I did? I changed my life a lot. I felt much better after I did the sleep training. So instead of just going, I'm doing everything wrong, try to then think if I am doing something wrong, let's try and document it and work out, be a little bit of a crime solver, and then, the solution for it. Thank you, Helena. I think many people listening today needed to hear all that exactly, you know, your own experiences. And before we finish today's conversation, I'd like to leave you with a image that has stayed with me for a few days now and probably forever moving forward. It shows a small monkey trying to desperately to save a fish's life. The monkey has got good intentions. He puts the oxygen mask on the fish's face. It care you know, it cares for that fish, but it doesn't understand the fish's world. And perhaps there is a lesson in that for us all. Social media is full of advice. Family, friends can offer also advice. Health care professionals offer advice. Most of it comes from a place of kindness. But before we try to change someone's life, we must first try to understand their world. The reality of living with MS is different to every single person. What works for one person may not work for another. MS is not a competition. It's not a moral test, and it's certainly not a disease caused by lack of effort. On MS World Day, let's replace assumptions with a curiosity. Let's replace judgment with compassion. Let's replace blame with understanding. And if you are listening today and carrying guilt and blame about your MS, perhaps it's time to gently put down the burden. Because some of the the heaviest things people carry with MS are completely invisible. They don't appear on MRI scans. They don't show up in their blood tests, but they can weight heavily on their heart and mind. Thank you, Helena, for sharing your story, your wisdom for everything today. And thank you everyone who's listening to this episodes. I think what I could say until next time, care of your brain, take care of your well-being, and perhaps most importantly, be kind to yourself always. Thank you. Thank you. Alright.

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14 March, 2026 Guided meditation with Dr Agne Straukiene

Mindful Park Walk- Nature’s Healing Moments

Dr Agne Straukiene films a mindful walk in Cockington Village park in Torquay, dedicating the video to people who struggle to get out due to mobility difficulties, such as wheelchair users without ramps. Agne invites viewers to spend a few minutes listening to birds, noticing spring, and appreciating nature’s beauty despite background sounds like toddlers. The walk includes stopping by a small cafe to enjoy water and ice cream while resting and regaining energy, reflecting on nature’s therapeutic power and the idea that life is beautiful but often overcomplicated.

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25 January, 2026 Guests Interviews and Charity events

But you look well- When MS Is Invisible

In this episode of the BeewellwithMS Podcast, Dr. Agne Straukiene, a neurologist, discusses the concept of 'invisible illness' in Multiple Sclerosis (MS) with Amy Thompson, founder of the MS Together charity. Amy shares her daily struggles with symptoms like fatigue, pain, and brain fog, which are often invisible to others. They also explore the importance of communication, self-advocacy, and the need for empathetic understanding from society. The episode dives into the challenges of living with an invisible disability, the necessity of realistic goal-setting, and leveraging technology for support. Finally, the discussion highlights the value of creating safe, inclusive spaces for young people with MS to connect and share their experiences.

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Welcome to Be Well with Emmett, a space where we talk honestly about living with multiple sclerosis, beyond MRI scans, clinical events, relapses, and what's visible in the outside world. I am doctor Agnes Storghiena, neurologist, and the first of Be Well with MS podcast. Today, we are talking about something many people with MS live with every single day, invisibility. And this is often described as invisible disease. You can look well, even be told you're doing great. Everything is fine. You're fine. Whilst quietly managing fatigue, pain, tingling, brain fog, uncertainty, and sometimes loss. Today, I'm joined by Amy Thompson, the founder of MS Together charity supporting young people living with MS. With lived experience of MS, Amy's deeply passionate about reducing isolation, changing misconception around invisible illnesses, and creating safe, inclusive spaces for connection and support. So welcome to this episode, Amy. Thank you so much. Very happy to be here. How are you today? I'm really good. Thank you. Yeah. All good. Amy, if MS were visible on the outside and people actually can start seeing what's going on, what do you think they would finally understand about your day to day living with MS? Yeah. So I think people would definitely understand MS a lot better if they could see it. I think they would understand that every day involves a lot of calculation and adaptation. And I think, for example, I wake up every day and I evaluate for one feeling, so how much energy I have, what I need to do that day, whether I'll have enough energy to do it. And I always say that I compare it to is if someone has, for example, a broken leg, people immediately understand the limits that they have and the frustration or pain that they might be feeling. But with MS and lots of other invisible conditions, it's just not that simple. And I think even though MS can be visible for some people, the fact that MS affects everyone so differently, it just makes it so much harder for people to understand what you're actually going through. And I think for me, it's just, like I said before, the kind of constant management. So pacing yourself, adapting, planning rest, and listening to your body when you need to. And just the uncertainty around living with MS as well and just not knowing how you feel from one day to the next. So I think, yeah, people would just understand that, yes, sometimes I can push through and I can do all the things I want to do, but other days, there is a lot going on beneath the surface, and that's always shifting as well. I think if people could see that, there would be a much better understanding of what people go through. I believe that maybe, Amy, that would build an empathy. Yeah. Better understanding of the nature. Living with this chronic condition that you're describing really captures that something is hidden and no one thing can be seen, and it shapes, like, every day's decision. There are days that perhaps it limits you if it is a severe fatigue and people look as you're you're making gliders, your hair is nicely done, you're glowing in your skin, you just done your marathon, you run five k. But then two days later, you maybe want to spend some time on the sofa because there is an exhaustion that is part of the of illness and disease. And if people could see all these kind of different colors and if these kind of symptoms could lighter color, it's like amber, green, or red, and it's a a it would be a cue for people to okay. She she needs some rest. She needs some good time to pamper herself and spend some time doing nothing, maybe. And that could give a better people confidence in communicating with you adequately by using their empathy and without causing you an anxiety and fear of things that you can't do at the time because of the lack of energy. And then people could stay away from you and then come back when they see this kind of green light when you are, like, fully energetic. But I think, Amy, it's a language, isn't it? You need to be more communicative. You need to express yourself often because what's not visible then how do you how do you communicate? How do you explain things? And building that kind of connection with other people that they could find you whether it's a facial expression or certain things that you start doing at home that indicates to other people and family members that you're really now exhausted and you will need some time. So do you have any sort of tips like how how is your partner noticing that he needs to stay away and give you some space? Or are there any sort of recommendations for people day to day? I think it is just pretty much what you've said. It's around communication. And I think to begin with, I wasn't that good at doing that, and I I didn't communicate my needs. But I think that is the only way that you'll get the support that you need because I understand that one day I'm able to run a marathon and the next day I might not be able to do anything. I understand that it's very difficult for someone to understand and comprehend. So I think that is where you have to advocate for yourself, speak up when you do need those, when you do need that rest. Take the time to rest. And then I think, yeah, communication is one thing, but then I think your loved ones, the more you do communicate how you're feeling, the more they then might pick up on those kind of subtle cues and signs that might mean that you need a bit more time or space or rest. So yeah. Because there is a constant need to explain, justify, prove that you are struggling with invisible disease, isn't it? This is is never ending. And it may feel exhausting activity because people come at you and say, hey, you look well. Have you ever felt painful and in invalidating rather than reassuring when people come and tell you, you're fine. Nothing is wrong with you. Like, how does that feel? Yeah. I think definitely in the beginning. So when I first got diagnosed and I first started telling people that I had MS, I was constantly met with comments like, you don't look ill. You look so well, and, like, a lot of confusion around that as well, which, again, I do completely understand. Amy, I'm just thinking nobody has got any bad intentions by saying that. They all feel like they're gonna uplift your spirits and say, hey, but you're you're nice. You're everything is so good. So I think that could be such a well intended phrase, yet it can land very differently when you're living inside the body that it doesn't feel comfortable on occasion. So I guess, again, maybe some implementing some sort of acceptance steps. I don't know. Cognitive behavior therapy, would that help? And acceptance therapy, okay, This is gonna happen to me more often because people potentially have no intentions for me to hurt each time I hear these words to me. Maybe taking it gently and and observing from other person's perspective and saying, hey, looking at the whole thing for more neutral, trying not to take that personally as a and you know what you're doing to help yourself anyway to feel better. And maybe gently reminding whilst you're hearing these kind of hurtful words to you that you're internally inside your you use your own voice and say, yeah, people. You should know better. But, obviously, don't say that to other people because that would be classed rude, in particular in The UK. Okay. That would be rude. So just listen, nod if you can, but have your own sort of strategies in place when you each time hear that kind of conversation because it it it can be overwhelming and emotionally upsetting. But if you have a nice strategy, psychological strategy in place like cognitive behavior therapy, CBT, or ACT acceptance therapy of the your situation and having some sort of kind words to yourself at the time when it happens. It may really help you to move throughout the day without dwelling too much what you just heard about yourself. Would you agree, Amy, that some sort of internal trash do you talk to yourself? I I spoke yeah. I guess I I have over the years when that conversation does come up. But I think the other thing is as I've gone through my LS journey and as I've got more confident in kind of talking about the condition and as I've learned more about the condition as well, I think it's pushed me in the other way to almost challenge those assumptions in a kind way. But it's almost an opportunity to open up conversations around invisible illness and, you know, educate people on the fact that, yes, I might look well, but I'm still managing these symptoms. And I think just having those conversations is what can hopefully just educate people more about the condition in general and then hopefully mean that they say less of those things. But, yeah, I think in the beginning, it was definitely harder to hear, but over time, I realized that it is just people not understanding, and it's always coming from a good place. Yeah. Yeah. Then my recommendation would be live your life as it is. Own your own reality. And you don't need to pay into someone's delusion. We you can think about for as a delusional thought, maybe, of someone who goes and tells you the stories of how things are, how wonderful things are. But if you are grounded, if you know your own reality and you're living what is here, now, and always, That's how you come to your own identity and who you are without any distraction and mental overwhelm. Moving on to Amy, the work and related issues. Currently, the lives we're living is ambitious. You have to prove your point. You have to achieve goals, and you have to be ambitious. You have to be productive every single day, especially in the world that is giving you rewards, visible outputs. We have a lot of going on in this world. How do you manage this? Yeah. I think it's very difficult. I would say that I'm still very ambitious. I don't think that's changed very much at all, but I am more aware of pace and boundaries that I need to put in place and the long term impacts that has as well. And I think founding a charity while living with MS hasn't been easy, but it's taught me that productivity isn't about constant output. It's more about doing what you can when you can. And over a kind of longer period, you will still get the output that you want. It just might sometimes take a bill a little bit longer. But that said, it is something that I definitely do still struggle with. And I think for the reasons that you mentioned, Dagny, I think we live in a world that revolves around output. And I think unlearning that kind of idea and being a bit easier on myself when it comes to that has been a learning curve in itself. And there are still days when, you know, taking a rest day feels uncomfortable. And I think I just then have to remind myself that it's just a whole it is it's a part of managing the condition, and and it's not a failure. It's just necessary to keep going in the longer term. So, yeah, it's something that I think is an ongoing struggle because of the world we live in, but I think it's something, again, that I've learned over time that it is so important to take that time to pace yourself, to set boundaries when you need to. And I think it does help me in the long run. Run. Yeah. Totally. What you're describing is like rewriting what the success looks like these days. And I think this rule applies to anybody, not necessarily living with MS. It's applied to me and everyone else. We have to pace and we have to slow down. We have our own lane of this kind of marathon or competition, and we're competing only with ourselves, nobody else. We choose our own battle. We choose sometimes, well, do you want to overtake maybe, or we want to take our time and slow down and not to compete at all. It's it's our conscious decision and choice. And, you know, we should all move away from constant productivity, assessing the goals, achieving in particular, I'm talking about the fixed goals that is difficult to achieve, going to gym forty five minutes a day every day type of goal. Who is gonna achieve that? I can't do this, can you? Nobody can. And get getting to this kind of more flexible goal setting, which would be, I'm moving to the right direction. I've done some exercise this week. I'm feeling okay. If I do more, I'll feel even more better. If I don't, I will be having more rest. That kind of language with ourselves, I think, shapes how we feel day to day. And I think we're moving towards more sustainability rather than productivity, which is we're not working in the factory. We can take time, and there are so many other tools to help and assist us to with the daily tasks. My patients are using some Alexa, which is going to switch on now, switch off Alexa, stay well. There is different other devices that people could use to help to increase their productivity and moving into the AI world with the writing on your behalf, setting the plan setting the plan for the traveling or journey or whatever it's maybe a visit at the hospital or preparation for visits with your nurse, etcetera, etcetera. So there's a lot to rely on. Would you agree? I mean, what do you think about the helping yourself with technology to navigate? Yeah. There's a lot of things out there that can help, and I think it is just finding what works for you and what would support you the best. But I loved what you said about goals as well, and I think it is just about being realistic and not setting yourself up for failure. There's back a few years ago, I would set myself really strict goal that I would never achieve complete because you have to be realistic and you have to realize that some days are gonna be good, some days aren't, and that's okay. So it's just about, yeah, being flexible and, yeah, just realistic, kind to yourself, and get in support from as many different places as possible because like we said, there's so many things now that can help us with so many different things. So yeah. Our brains tends to fixate on some events, some sort of stories in our minds. We're always constantly thinking about something. Our mind is busy all the time, everyone. So it's not just you that is obsessed about something, but it's just how we set ourselves, how we take our step backwards and observe these thoughts from a distance. Imagine maybe you're floating on the nice fluffy cloud, and the other clouds are your thoughts that keeps coming. But what you could choose is not to build a whole story or drama inside your mind, but let these kind of thoughts that keeps coming, they will be coming. The more you try to suppress, the more they become visible and and accessible. So try to I think my recommendation would be try to observe these kind of thoughts and without creating another story because that's how you keep your resilience and awareness in that present moment without overwhelming yourself. Amy, I would like to speak about your favorite topic that you're most passionate about is MS together. And you're doing the wonderful job throughout MS together, and you create spaces for people, young people who don't have to perform maybe that they are too well or super good. They all more or less on the same boat. They don't need to hide anything, their struggles. You have a open, honest conversation, especially with young people in their early life. So tell us a little bit your ideas around this project and charity and how people evaluate what you do and what do they find when they join MS together. Yeah. So I think that the reason behind setting up MS together was it started through my own personal journey. So it started with me getting those kind of comments like, but you don't look ill, but you look so well. And that led me to start a blog, which I named, but you don't look ill. And I just started to share my whole journey about MS from kind of start to the diagnosis to, I mean, trick choosing a treatment, to just living everyday life, to navigate in dating, to work, to so many things. And through that, I then found lots of other young people that were feeling very similar to me. And I think that then made me realize that there were lots of other young people out there that also didn't really feel like they had anyone else to speak to about the condition. I think I found lots of great support out there. There were so many amazing charities offering lots of thing, kind of different services. But what I didn't find was that age specific support and spaces for people to just, like you said, just speak to each other and have those kind of open conversations without feeling judged, without feeling that they needed to perform. And it started with just a very informal support group, and then over years, it just grew into what it is today, which is now, like you said, a charity, and we provide lots of different services. But I think the main thing and the reason why I think people don't feel like they have to perform when they come to us is because we have designed everything with people living with MS. And that means that there's a lot of flexibility. There's permission to show up exactly as you are, and we don't expect people to be positive all the time. There are lots of people that are positive all this time, but we don't expect that. We don't expect them to have to explain themselves, and there's no kind of pressure to engage in any particular way. There's lots of different ways that people can get involved from our kind of support groups to our events. And and I think in practice. It's been building kind of that flexibility into the charity. For example, with our event, people can arrive late. They can leave early. They can take breaks. They can join a virtual call, and they don't need to turn their camera on. They can just sit there and listen and take in the information. And there's just no expectation, which I think is so important in kind of creating that safe space for people. And it being as another example is in our support groups, we are very clear guidelines, then prioritize kindness and respect and mutual support. And I think it is just about creating a space that people feel safe in, and they a space where they feel like they won't be good, and they won't be pressured to present themselves in a certain way. That idea of permission not having to pretend feels incredibly powerful. And if you are age 35, is this is the limit's age? And if you're younger than 35, you are fully accepted to be part of the MS together. Is that correct, Amy? What's the Yeah. We most of our services are aimed at people aged 18 to 35 in The UK and Ireland, but we do have some services. So we've got a support helpline. We've got a newly diagnosed guide that's currently being developed, and those are all open to anyone affected by a math. So we predominantly focus on the age group because we feel like it's important for that kind of age group to have age specific support. And and, yeah, we didn't want to completely close off everything as we know that, obviously, MS affects so many people from all age groups. Yeah. It's important that we still offer some things to Wonderful. Wonderful. And how people can find you? Is it they Google MS Together, or there is a specific link that they need to follow? Yeah. So Google MS Together. We're also on social media platforms, and our bundle is MS Together official. But, yeah, you should be able to find us by Googling. And our website, it's mstogether.org as well. Okay. Wonderful. So people tune in to and listen to all these positives that we just described and find your peers that are living with MS and experiencing exactly the same, and they were numerous enough of times told that they're not good. Nothing is wrong with them. So there is a and behind the real world, there is a an alternative world that I tried to summarize in one of the recent series. You can go and listen to the latest episode and read around stranger things in MS. But what we'd like to say that, Amy, I think you're giving an opportunity and a lifeline for majority of people, and this is initiative with some psychology service and support, giving opportunity for people to be open and honest and talk to each other. We are social creatures. We have to connect and communicate with each other because it takes your mental overload when you start expressing yourself. Even if you are introvert and you want to hide yourself, exchanging a few thoughts and ideas is that's how you start feeling more sane about yourself living with this condition. And in particular, if it is invisible MS. And my last question, what's one assumption you wish clinicians, employers, and even loved ones would stop making about people living with invisible MS? I think I'm probably going to repeat myself, but I think it is just the fact that looking well doesn't always eat poor feeling well. And, yeah, just just because someone doesn't look poor doesn't look unwell doesn't mean they aren't managing symptoms or the kind of emotional weight of MS. And I think also many people with MS are capable driven and, you know, doing amazing things with their lives, but that doesn't mean that they don't need understanding flexibility and sometimes just a bit of patience. And I think just because someone is doing all those amazing things, then they might come across as, like, they're doing really well. I think just try and keep in the back of your head that there could be a lot more going on. Mhmm. And I think I also wish that there was more trust in people's self knowledge. And I think MS can affect women in so many different ways like we've talked about. But if you have assumptions about how it will affect someone and you're not really listening to them, even though they're the expert, I think, yeah, that's when misunderstandings can happen, and the support might not be there for that person. And so I think, yeah, just listening, asking, and believing is what I would say. Listening to someone's experiences and how they're feeling and how it's affecting them, asking how you can walk down and how you can help them and what's going on that day, and then believing what they're saying because I've heard so many stories from these people into people in the where they don't get believed about sentence and and not of that is because they're not visible. But I think we belong, you know, and I think the fact that MS is known as a and then with a good nips when we just need to get that forever. Believe again, he was experienced. So and I can't believe it. That's such an important reminder. Assumptions, even kind ones, can quietly cause a lot of emotional problems, sometimes harm. And although intentions are not bad, but always think about these sensitive questions or comments that you give it to people. It's just being good communicating. We should invest more time to learn how to best communicate with each other. And for that, I suggest people read books. Read books. It really helps to understand the practicality and improves our language. And what do we say? And we sometimes we need to be quiet and just listen, be present, and offer some help. That's not gonna harm anybody if you offer your help. Amy, thank you. Not just for sharing your story, but for giving language to experiences to so many people who living with this condition will recognize that. And we very rarely have a chance to reflect back when we've done already and we said things, but this is a chance for us to if you're living with MS, reflect what you had already without building these stories and dramas in your mind, just observing these kind of previous experiences and let them go as clouds. For people who never approached or never met a person living with MS, this is a learning point for you to learn how to use the language and not to expose with unnecessary comments that may be harmful and emotionally impacting and causing a lot of trouble. For carers and parents and family members, a reflection time during this recording and trying to improve. If you want to see the change or have a different outcomes each time, you need to change your language, to change what you're doing, to change your habits, whatever it matters to you. If you're listening and parts of this conversation felt familiar, please know this invisible MS does not mean mild MS. And certainly, it doesn't mean you owe anyone proof. At Be Well with MS, we believe care begins with communication, understanding. Understanding begins when we listen. If this episode resonate with you, consider sharing with someone who might need to hear all this. A friend, a colleague, a carer, a parent, maybe your clinician needs to listen to this. Until next time, be gentle with your energy. Take care of your nervous system. And remember, just because something is invisible doesn't mean it's insignificant. Take care, everyone. Thank you for joining us. Bye. Evening. Bye.

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