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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

• Joke's MS diagnosis in 2019 and first symptoms

• Mindset, lifestyle and work changes

• Participation in more than 10 MS studies

• Why patient voices matter in research and care

• Empowering youth with MS at MS-Liga Vlaanderen

• Insights from ECTRIMS & EMSP conferences

• Prevention, comorbidities, and resilience

• 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 en