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In this inspiring interview, Belgian midwife and patient expert Joke Soetaert shares how her 2019 MS diagnosis became a catalyst for growth, advocacy, and community. She talks about mindset, research participation, empowering young people with MS, and why patient voices belong at every table.
Overview of topics
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Joke's MS diagnosis in 2019 and first symptoms
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Mindset, lifestyle and work changes
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Participation in more than 10 MS studies
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Why patient voices matter in research and care
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Empowering youth with MS at MS-Liga Vlaanderen
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Insights from ECTRIMS & EMSP conferences
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Prevention, comorbidities, and resilience
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Hopes for precision medicine and the future
Before the Interview
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Complete Interview
1. Personal Journey & MS Diagnosis Can you introduce yourself and tell us a bit about your work as a midwife? Joke: I'm really grateful that you thought of me, and I'm so happy to be part of this podcast. So hello, my name is Joke Soetaert and I am 33 years old. I live in Belgium and I work as a midwife. Most of the time I take care of premature and sick babies, but I also work on the maternity ward with mothers who have just given birth and their newborns, pregnant women and women recovering from gynecological surgery.
How did you experience the moment of your MS diagnosis in 2019, both personally and professionally?
Joke: Well, it actually started about nine months earlier. In the summer of 2018, I was about to change jobs. I was working in a large hospital in the surgical theatre, and after five years I was finally going to follow my dream of working as a midwife. Just before that change, I had an episode of optic neuritis. The neurologist told me that I had a higher risk of developing MS and suggested regular follow-up at neurology. So nine months later, I was settling into my new job. I had just finished four very busy night shifts. After the last one, I felt a slight numbness in my fingertips. The neurologist had told me that almost any symptom could be linked to MS, so of course it crossed my mind. But I didn't really believed it, I was still in denial. The next morning, I woke up with the same feeling in the fingers of my other hand. That could no longer be a coincidence. I contacted my neurologist, and very quickly I was admitted, so both MRIs, brain and spinal cord were planned, along with other tests. On Monday I was admitted, and the first MRI was of my spinal cord. It already showed a fairly large white matter lesion. Because of that, I received the diagnosis of MS the same afternoon. It felt like the ground disappeared beneath my feet … People often say that after receiving a serious diagnosis, you only remember a small part of what the doctor tells you. I can definitely confirm that.
The next day, the brain MRI turned out to be completely normal, I had no lesions. I also began another round of corticosteroids, three infusions. I was allowed to go home during the day because in my hospital the infusions are given at night. So two days after my diagnosis, I was with my boyfriend. We were in a relationship of about one and a half year. He suddenly told me that he couldn't handle it anymore. He said he was afraid of the future, especially of the idea that I might end up in a wheelchair. It came completely out of nowhere. That actually overshadowed the diagnosis itself. For me, this was much worse. My whole future fell apart, and I had to completely rethink what my life would look like. It was very intense. I wanted to return to work right away, mostly for distraction and to be with my colleagues. But my neurologist gave me two weeks of sick leave. She called it "bereavement leave." That week, on Friday, I had a resuscitation training course at a university hospital, and I didn't want to miss that. But it turned out to be too much; the long hours of standing, listening, concentrating, not sleeping enough, not eating enough during the last 5 days. I fainted. Luckily, I was surrounded by anesthesiologists, emergency doctors, midwives, and nurses, so I was in the best hands. But it showed me how important it is to take some time to recover.
What changed the most for you after being diagnosed – in your mindset, your lifestyle, or your approach to work?
Joke: Wow, a lot changed for me after my diagnosis. Before, I was kind of… lazy. I didn't really have a clear goal in life. I just made sure I could get through each day, but my free time wasn't really dedicated to anything. I knew it was healthy to move and exercise, but it didn't happen very often. After my diagnosis, of course, I immediately started reading some scientific articles about exercise, mindset, nutrition, sleep, stress and all those things. And that helped me shift very quickly. During the two weeks of "bereavement leave," I already started thinking about what I could do with this new reality. I quickly realized I didn't have fatigue or really limiting symptoms, so I started gathering knowledge immediately. And now, six years later, I can say that I try very hard to make a difference for myself in all these areas. The overarching factor, of course, is mindset. I was able to step out of the victim role quite quickly, which is often not easy. By looking at it from a different perspective, I could even see very early on the opportunities that my MS diagnosis could bring. A few months later, I already started thinking about how I could find a place in the MS world, how I could be meaningful, not just for myself, by gaining more knowledge, feeling better, and meeting peers, but also for the wider MS community. At work, I felt very supported by my colleagues. I think it also helped that they work in the medical field. They asked thoughtful questions, which I really appreciated. After those two weeks, I returned to work in the neonatal unit. I had to lift a baby and I told my colleague, "Wow, thankfully I'm in the neonatal unit, because here you only lift half of the weight of healthy newborns!" That was my first joke, and it set the tone. I often made jokes about it at first, and after a while, it didn't really matter anymore and it didn't occupy my mind as much. But that was very important in my process, giving myself, and my colleagues, the space to talk about it.
How did your medical background influence the way you understood and processed your diagnosis?
Joke: Yes, in my eyes, it had a huge impact. Normally, I like to know everything, especially about a topic I understand or that's my area of expertise. But leading up to my MS diagnosis, when I was considered at risk, I didn't look much into it because I was convinced I wouldn't get it. I was absolutely certain of that. Of course, I was completely wrong, and the diagnosis really hit me hard. But I picked myself up and immediately started reading and learning. Because I could grasp the knowledge fairly easily, I quickly had space to explore the psychological side of processing a diagnosis. We can actually speak of it as a kind of living loss, it's a loss of the life you knew until that moment, a life without worries in that area. And you don't expect that you'll need to make adjustments or be flexible in certain parts of your life. Now, six years later, it turns out that it hasn't really been the case at all in my situation. I haven't had to make any adjustments. I still work full-time, early mornings, days, evenings, and night shifts, including weekends and holidays. And those can be very tough, but that's the case for all my colleagues. So I don't really experience any extra burden. Even in terms of sports and physical activity, I've actually improved, I used to do almost nothing, and now I exercise a lot. Since my diagnosis, I also took on several challenges: we climbed part of Mont Blanc, I ran a half marathon, and I walked 80 kilometers, the entire Belgian coastline in just one day. And my mindset has evolved enormously, which I find very fascinating and I am very grateful for that.
2. Patient Expert & Scientific Involvement You've been involved in scientific research since 2019. What has it been like to participate so actively in MS-related studies?
Joke: Yes, that's correct. While I was looking up information about MS, I came across some scientific studies that I was eligible to participate in, and I jumped in without hesitation. The first study was about walking fatigue, and it went really well. The researcher was very kind and immediately made me feel comfortable, and that's basically how it continued. So far, I've participated in more than ten studies, and it's always been a very positive experience because of the great contact with the researchers. They are passionate people, and we shared that enthusiasm. I was also able to help them connect with other people with MS, and I was always very interested in everything behind the studies, including the results afterwards. I find that very fascinating.
I've taken part in studies in Belgium and also in the Netherlands. I definitely recommend it. You get to see your own results, but also the group results and the differences within the group, often comparing people with MS to healthy control groups. In some studies, you also get the chance to try out different kinds of equipment, which is very interesting.
How does being both a patient and part of scientific projects shape your view of MS?
Joke: Being so involved in scientific research and participating in these studies gave me a really good feeling right away. It showed me that many researchers are working on MS every single day. A large group is looking for new and better treatments, but in my case, the studies were always about the impact of exercise or cognition for example. Knowing that this kind of research is happening is very hopeful. They have already discovered a lot about what can have a positive effect for people with MS and how people with MS can be supported. Studies often show that certain interventions, like following an exercise program, can even have a bigger impact on people with MS than on the healthy control group. For example, if someone wants to start cycling, walking, or running - even if it's harder for people with MS because of the condition or because lower general fitness - they often see greater improvements in many areas than someone without MS following the same program. So the gains can be bigger, even if the effort is also greater. And even if the final result is sometimes still less than the average healthy person, it doesn't really matter. What matters is the healthy impact it has on your body, your heart, your blood vessels, and your overall health. This has given me a lot of inspiration. I feel supported and part of a community, and I know that many people are working on this. Things aren't standing still. And that feeling is really comforting.
What role should people living with MS play in research and medical decision-making?
Joke: People with MS naturally play a crucial role in research, because without participants, many studies would not be possible. It's also important to have a variety of participants, depending on the purpose of the study or the eligibility criteria. But diversity in age, gender, background, and ethnicity is very important, because there can be differences in how a body responds to something, or how certain parameters develop, both regarding MS and general health. Nowadays, researchers are also increasingly focusing on starting from the perspective of people with MS. This means that we get more and more opportunities to be involved in other aspects of a study, to help shape it from the very beginning. For example, we can participate in discussions about whether a certain topic, intervention, or medication should be studied. Usually, patients who have received specific training can be part of this process.
There is, of course, a lot of paperwork involved in research, like consent forms, where participants are clearly informed about what will happen, the potential risks, who to contact, and that their data will be handled anonymously. Patients can review these forms and suggest improvements, for instance, if certain sentences are too difficult to understand, or if the information could be presented in simpler language. They can also help highlight what is most important for patients. Another area where patients can contribute is in supporting participant commitment. Some studies last for months, requiring participants to follow certain procedures correctly for the results to be valid. Patients can provide advice on how to keep motivation high and how to engage both people with MS and healthy participants who are willing to dedicate to the study. Even after the study is completed, trained patients can give feedback on the results or help interpret them. Sometimes participants are informed about what was discovered, what wasn't, or what was expected but didn't turn out as predicted. This feedback can help guide future research, tailored to the group of participants and healthy controls. So, we are increasingly involved in the entire research process, which I find incredibly interesting and empowering. Without my diagnosis, I would have had no connection to MS. But now, it has sparked my interest, become a passion, and I can make a difference because my perspective can be valuable to others. It's really rewarding, it's a way of collaborating to gain more knowledge about MS.
People living with MS should also play an active role in medical decision making. Their experiences and perspectives are crucial for making healthcare decisions that truly meet the patients' needs.
3. Empowerment & Youth Advocacy As coordinator of the youth division at MS-Liga Vlaanderen, what are the goals and core values of your work?
Joke: Yes, I have been a volunteer for about four years now, I'm the coordinator of the Youth Division at MS Liga Vlaanderen, which is the patient organization for people with MS. We focus on young people up to 35 years old and their surroundings. These are some of our goals: We want to start from the needs of young people with MS. What do they need? What challenges do they face? Where can we make a difference? We want them to feel that they are not alone and that there is a place where they can turn with their questions, concerns, or simply for relaxation and connection. In addition, we believe it is very important to provide accurate and understandable information so that young people feel stronger and can take control of their own lives. Empowerment is a key word for us.
Why is a dedicated space for young people with MS so important?
Joke: Young people, so in our case, up to 35 years old, have a very different life world compared to slightly older people. Occasionally, very young children are diagnosed with MS, but we haven't met them at our activities yet. The youngest people we usually see are teenagers. Sometimes there's a teen who is still in school. They are thinking about studying, about what job they want in the future, and getting a diagnosis like MS can bring a lot of uncertainty, fear, and stress. They are often looking for stories from others who, for example, are working in their dream job, and want to know if that is possible and how. Of course, everyone's experience is different, and you can't predict it. My idea is that at that moment, you should just pursue your dreams. If things become more challenging later, you can adjust, but it would be a shame to give up on an active dream job just because of the fear for future fatigue or mobility issues. Many of our members are in their early twenties, building their lives, starting their first jobs, entering relationships. We also have young parents, young moms and dads, and we often organize monthly activities that are family-friendly, where they can bring their little children. This gives families a chance to enjoy activities together and, for the children, to meet other kids who have a parent with MS. That can be very enriching when they are a bit older. Over the years, MS has less impact on life thanks to better medication, faster diagnoses, and improved supportive therapies like physiotherapy, occupational therapy, … . So fortunately, the impact of MS is becoming smaller. Many recently diagnosed people are very active and want to keep doing active things. MS no longer fits the old image where you automatically end up in a wheelchair. Of course, some people still experience that at a young age, but fortunately it's less common. There's also a big difference when you compare the average age group of our members with groups of people in their sixties, seventies, or eighties, those people often have had MS since before modern medication existed. So there's such a big difference. I remember one of my first fears when I tried to meet other people with MS: How would they be? Would everyone be in a wheelchair? Would everyone complain or be negative? But when I joined the youth division, some young people did use wheelchairs, crutches, or walkers, but you quickly stop noticing that because the group was so positive. Often, the activities weren't even about MS. Of course, there was space to talk about it, but it was mostly about life, current challenges, and supporting each other. There's so much inspiration within the group, and it's wonderful to see.
Can you share a moment that shows how your work empowers others? Joke: I think this happens in different ways and on different levels. Sometimes young people come to us and say things like: "Three years ago, I attended your youth conference for the first time. I was completely overwhelmed, but I could see how passionate you all were. And how passionate the MS experts were in presenting information, in the most accessible way possible, trying to inspire us."
And since then, they've taken steps. They feel much better. They've also attended other activities, met people. People often keep in touch outside the activities, and many friendships continue beyond our events. We also really try to encourage young people to take control of their own care, to take that empowering role. For example, when it comes to information about MS, like a new treatment, we encourage them to be well-informed when talking to their doctor, to really engage in the conversation, and to practice shared decision-making which means looking at the aspects that matter most to you. For instance: I want my treatment to be as effective as possible, or I want to go on a world trip, so it's important that my medication allows me to do that. Or: I really don't like going to hospitals, so I'd prefer something I can do at home. And you should also build the best team of MS professionals around you, starting with your neurologist. I often hear young people say: "I barely know my neurologist's name, because I see him or her so rarely. And I don't think they know that running is my hobby, or that I'm concerned about having children, or that managing life with my two toddlers at home can be challenging." All aspects of life matter. If your doctor doesn't know about these things, how can he or she then provide the best care for you? So we strongly encourage young people: if it's not a good fit with your doctor, find someone else. You'll have MS for life, and while there may not be a cure yet, it's important to find a doctor with whom you really form a team. Someone who supports you and helps you pursue your goals and live your life as fully as possible. It's also a bonus if the relationship is pleasant and comfortable, so you can even discuss awkward or personal things. In that context, many people have come to us and said: "Thanks to you, I took the step to choose a new neurologist or a new physiotherapist, and that has really helped me move forward." That gives me so much joy. You just need to find the right match.
4. Voice at the Table: Collaboration & Congresses You attend and contribute to (inter)national MS conferences like ECTRIMS and EMSP. What does being there mean to you?
Joke: ECTRIMS, for example, is the largest MS conference in the world, with around 9,000 neurologists, researchers, industry professionals (people who are involved with medications, devices or technologies). It's really thé place to be. I see it as the start of the MS year, everything starts there. At the conference, there are many meetings. You meet many new people, get introduced, recognize people from LinkedIn, or someone taps you on the shoulder and says: "Hey, are you Joke? Can we get to know each other? Can we talk for a moment?" Your head becomes a whirlwind of ideas, new projects, things you've heard. It's also a time to speak with industry representatives: can we collaborate? We feel there's a need here. We had this idea. And essentially, all of that happens over three days. I think it's very important for our youth division to be there, and the rest of the year, we develop everything we discussed. Beyond networking, which happens naturally because almost everyone in the MS world is there, the conference is about sharing information. Some of it is already known, but often it's very in-depth, and sometimes it's completely new. For example, new guidelines or medications are often presented there. Every evening there's a poster session, about almost 2000 posters. Research groups present their studies, or parts of their studies, results that haven't been published anywhere else. So it's about scanning for what's interesting for us and what I can take from it. Then, when you're back home, you can go deeper. The researchers are also at their posters, ready to discuss their work, so you can get extra information directly from the source or have a conversation about it. That's also how we, Nele, met eachother recently at the EMSP conference in Prague a few months ago. I'm sure we had crossed paths many times at other international events, but never formally met until your presentation last year. That was really nice. A conference like this is basically three days completely immersed in MS. From morning to evening, everything is about MS. I try to get up early to fit in a workout or a run. Mostly you already see someone in the gym and can guess from their profile that they might be going to ECTRIMS. And you start a conversation. Then showering and getting ready. At breakfast, most people are already wearing their badge, and some will come and sit at your table: "Sorry, can we have a quick meeting? I have an urgent question I won't get to ask otherwise." It could be about what we as a youth division think about something, or it can be about my personal perspective. Then you go back to your room to freshen up, and the ‚entire city', thousands of people, are heading to the conference. On the way, you already meet people and start conversations. And I also try to post a small report with pictures each day. It never stops. You don't really get to sleep very early. But I'm clearly very enthusiastic about these events and I really enjoy them, they are amazing. It's like soaking everything in with all my senses.
You recently presented a poster about prevention, based on your own experiences. What was your key message?
Joke: Yes, that's correct. At the EMSP annual conference, which brings together European patient organizations, there was a call to present a poster from the patient perspective. I chose to focus on comorbidities (which are the presence of one or more additional medical conditions occurring alongside a primary disease, in this case MS) and prevention. My key message was that while medication is important in managing MS, a holistic approach can make a real difference. From my own experience with obesity and hypertension, I've learned that lifestyle interventions, like exercise, healthy eating, stress management, and also regular follow-up with healthcare professionals can improve both physical health and mental resilience. Empowering patients to take an active role in their care and addressing comorbidities in a coordinated way is essential for better long-term outcomes.
How do you build bridges between professionals, pharma, and people living with MS?
Joke: Building bridges between professionals, pharma, and people living with MS is all about creating open, respectful, and transparent communication. It starts with listening to each other's perspectives, people with MS share their lived experiences, professionals bring their clinical and research expertise, and pharma can provide insight into treatments and innovations. By organizing meetings, conferences, and collaborative projects, everyone can work together towards common goals. It's also important to involve patients from the very beginning (like a mentioned before about the scientific research topic), so their needs and priorities help shape research, treatment development and education initiatives. When everyone is aligned, it leads to better outcomes for people living with MS.
From your perspective, what does true patient engagement look like?
Joke: From my perspective, true patient engagement means involving people with MS at every stage, not just as participants, but as active partners. It's about being listened to, having our experiences and priorities valued, and helping shape research, treatments and healthcare decisions. Real engagement includes contributing to study design, reviewing patient materials, giving feedback on outcomes, and helping translate complex information into something understandable for others. It's not just consultation, it's collaboration. At an individual level, so for everyone with MS, patient engagement means for me actively taking charge of your own situation. It starts with gaining knowledge so that you are well-informed, creating meaningful conversations with your healthcare providers, and making well-founded choices that you truly support. This approach leads to better outcomes and is something that continues throughout your life, with every new event or challenge.
5. Looking Ahead & Final Thoughts Joke: What development in MS would you most like to see in the next five years? I really hope that in the next five years we can move towards precision medicine, where doctors will be able to better predict which treatment works best for which person. So instead of a more like one-size-fits-all approach, the treatment is really tailored to the individual living with MS. That would allow for more informed choices, better outcomes, and I think it could make a huge difference for many people.
Based on your journey, what do you wish more people – including professionals – understood about MS?
Joke: Well, based on my personal situation, I've been living with MS for six years now, and I still don't really experience symptoms. I don't have fatigue or other issues, so I don't feel I'm in the right position to fully answer this question. But what I do notice is that people without a chronic condition sometimes forget that even when MS seems 'silent,' it still has an impact. It's always there in the back of your mind. You need to stick to your treatment, go for regular check-ups, stay alert to new symptoms, and make sure your lifestyle is as healthy as possible. And the moment you feel something unusual, something anyone might experience, you think: is this my MS? That has a mental impact too. What I really appreciate is that I've never felt this was overlooked by my doctors or my medical team. They really understand this side of living with MS, and I think that's essential.
What keeps you motivated and hopeful on difficult days?
Joke: For me, the feeling of not being alone is incredibly powerful. It has such a positive effect on me. And that's exactly what we try to create with our youth work: peer connection, but especially positive peer connection. And also, knowing that I can always turn to my medical team whenever I have doubts or uncertainties, that really matters. I truly trust that I'm receiving the best treatment and the best approach tailored to me.
Complete the sentence: "For me, multiple sclerosis is..."
Joke: … a strength ! I was able to turn my diagnosis into something very positive, into a purpose in my life, a reason to get up every day. Through my volunteer work as coordinator of the youth division, I can make a real difference for young people with MS together with my team. And in my role as a patient expert, I also contribute in different ways: by engaging with pharma, hospitals, government, schools, and by being part of advisory boards in several Flemish hospitals. There, too, I can bring in my perspective and experience. All of this gives me a deep sense of fulfillment, knowing that I can actually mean something for others.
Finally, what would you like to share with our listeners – whether they live with MS, support someone who does, or simply want to understand more?
Joke: I want to share that living with MS doesn't have to be the end, it can also be a new beginning. It can be a start of a life that's perhaps even happier, with more dedication to what truly makes you happy, more meaningful connections, and, like in my case, even a completely new passion where you can make a real difference. For those living with MS: you are not alone, there are communities that understand what you're going through. For those supporting someone: your presence matters more than you might think. And for everyone who wants to understand more: stay curious and open, because awareness is the first step toward inclusion and understanding. Focusing on connection, positivity, and the things I can do is what gives me strength and that's something we can all carry with us.
How and where can interested people find you online?
Joke: People can easily reach me through Instagram, and I also keep my LinkedIn profile up to date, where you can find a lot of information and send me a message. For our youth division, we're active on Instagram as well, and there's information available on our website too. IG: joke.soetaert LinkedIn: www.linkedin.com/in/joke-soetaert-b97424208 Jongerenwerking MS-Liga Vlaanderen IG: msliga_jongerenwerking https://samen.ms-vlaanderen.be/nl/jongerenwerking
