In this interview, Susanne Melanie Schmid shares her journey with multiple sclerosis, how she found strength in vulnerability, and what helped her push beyond limits—literally and figuratively. As part of the international TheMay50K challenge, she not only walked over 60 kilometers, but also built meaningful connections, including with MS advocates in South Africa. Susanne speaks about her diagnosis, therapeutic path, and what drives her today with warmth, clarity, and optimism.
This conversation originally aired as part of the German MS Perspektive podcast with very few different questions.
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More InformationTable of Contents
Introduction – Who is Susanne Melanie Schmid?
Susanne Melanie Schmid: My name is Susanne Melanie Schmid. I live in Germany, in Bavaria near Munich where I was born. I’m 42 years old and married. I love to cook and I enjoy learning modern Greek.
Diagnosis and status
When were you diagnosed with multiple sclerosis and what led to it?
Susanne Melanie Schmid: I received my diagnosis in September 2024. It was still very new when we spoke. I simply couldn’t bear the symptoms and pain on my own any longer.
Did you have any previous symptoms that, in retrospect, were related to multiple sclerosis?
Susanne Melanie Schmid: Yes, unfortunately, quite a lot for many years – pain, vertigo, balance issues, bladder problems, exhaustion – a whole bunch.
How were you feeling about the diagnosis and what was it like for your loved ones?
Susanne Melanie Schmid: Honestly, I was relieved. Having a diagnosis was a game changer – I could finally get treatment and support. And since the possibility of a brain tumor had been raised the previous summer, I was especially relieved it “only” turned out to be MS.
Did you receive any recommendations for disease-modifying therapies at the beginning, and what was your decision?
Susanne Melanie Schmid: Yes, I was recommended to start right away since I had gone so many years without treatment. I agreed completely. I’m currently on Ofatumumab (Kesimpta).
Have you had a change in therapy and if so, for what reason?
Susanne Melanie Schmid: No, I’m still getting used to this one.
Are you using any symptomatic therapies? If yes, which ones?
Susanne Melanie Schmid: Yes. I have less pain now, so more exercise is possible. I attend regular physiotherapy, including for my pelvic floor due to bladder issues. I also take medication for that, which allows me to sleep at night. I practice relaxation techniques like progressive muscle relaxation and Qigong.
How did you adjust your lifestyle after diagnosis?
Susanne Melanie Schmid: I changed my diet – it was already healthy, but now it’s even more so. I reprioritized and take more breaks, earlier. I manage my energy more consciously.
What do you think about your future and have your professional and private plans changed?
Susanne Melanie Schmid: I’m optimistic about the future. Adjusting plans is not the end of the world. I’m curious, positive, creative – I just try things. Having plans helps – because then you can adjust them.
What was your rock bottom with multiple sclerosis and how did you fight your way back out?
My lowest point was the time without diagnosis, support, or treatment. Fighting back? Sometimes I don’t know how I did it. The key was to not give up and to find someone who would listen and believe me. My gynecologist was the one who truly helped by referring me. The first neurologist was a disaster, but eventually I found a great one. Don’t give up.
How are you currently doing with your MS?
Susanne Melanie Schmid: We’re still getting used to each other – but it’s going quite well so far.
TheMay50K
What motivated you to take part in TheMay50K Challenge, and what did you gain from it?
Susanne Melanie Schmid: The slogan „Leave your limits behind“ sounded promising. I had no expectations, I just did it. And I gained more than I hoped for – emotionally and socially.
How did you manage to complete the 50 kilometers, and what helped you to keep going?
Susanne Melanie Schmid: I walked every day, no matter the weather or mood. In the end, I walked 62 km. Company helped – I involved friends, family, my doctors, therapists, even LinkedIn contacts.
What impact did your social media engagement have, and do you have any tips for others who are thinking about taking part?
Susanne Melanie Schmid: It kept me going and lifted my mood. I connected with MSSA in South Africa through the challenge and found new friends. My tip? Reach out, connect, and don’t be afraid to involve others.
Wishes and goals
Have you got a big unfulfilled wish?
Susanne Melanie Schmid: I’d love to sit on the jump seat in an airplane cockpit. I really enjoy flying.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
Susanne Melanie Schmid: Earlier diagnoses for everyone, regardless of location. More awareness. Fewer ignorant comments – from doctors and the public.
Do you have any wishes for how human interaction should change?
Susanne Melanie Schmid: Yes. Be more human, kind, and supportive. We’re all in this together – life, MS, or whatever else. Talk about good things. Say what or who made your day. We’re not robots – let’s see each other.
Quickfire Q&A Session
What is your current mantra?
Susanne Melanie Schmid: Life is now – and it’s precious.
Looking back, was there a decision in your life that had a particularly formative influence?
Susanne Melanie Schmid: Working for Lufthansa – explains my love for airplanes – and meeting my husband.
What person would you love to have a fireside chat with and on what topic?
Susanne Melanie Schmid: I’d love to talk with listeners. Let’s chat about life – mine, yours, whatever’s on your mind.
Complete the sentence: "For me, multiple sclerosis is...."
Susanne Melanie Schmid: A global thing. We’re in this together – and together we’re stronger.
Which website can you recommend on the topic of MS?
Susanne Melanie Schmid: The website of the MS International Federation (MSIF).
Which book or audio book that you have recently read or listened to can you recommend and what is it about?
Susanne Melanie Schmid: Full Catastrophe Living by Jon Kabat-Zinn – about using the wisdom of your body and mind to face stress.
Farewell
Do you have any advice you would give your younger self for the timing of diagnosis?
Susanne Melanie Schmid: I’m just grateful for how I keep going.
Is there anything else you would like to share with the listeners?
Susanne Melanie Schmid: We’re all human. Don’t be afraid to show it. Support each other. It’s more fun to be surrounded by warm-hearted people.
How and where can interested people find you online?
Susanne Melanie Schmid: On LinkedIn – Susanne Melanie Schmid – and I have a website.
Thank you so much for the conversation, Susanne. It was a pleasure!
See you soon and try to make the best out of your life,
Nele
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