Living with multiple sclerosis (MS) can bring many unknowns—and with them, fear. Whether you’ve just received your diagnosis or have been managing MS for years, that sense of uncertainty can feel overwhelming. In this heartfelt episode of the MS-Perspektive Podcast, I share my personal journey with fear, from the early days of my diagnosis to finding strength and confidence through action, connection, and reflection.
This episode doesn’t just focus on the fear of disease progression—it also explores deeper social fears, like the global erosion of democracy, and how such changes can impact vulnerable communities, including people with chronic illnesses. Through practical advice, emotional honesty, and empowering tools like success journaling and civic engagement, I help you take back control—one choice at a time.
If you’re looking for encouragement, practical strategies, and a sense of connection in uncertain times, this episode is for you.
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More InformationTable of Contents
Introduction
I’m really glad you’re here. As I mentioned, today’s article is about fear, and I think that plays a huge role when it comes to MS. Especially right at the beginning of a diagnosis – you’ve probably been afraid too, haven’t you? I certainly was. At first, I had so much fear. Where is this going to take me? What does this mean?
I googled a bit back then – it was summer 2004 – quite a while ago now. And unfortunately, there weren’t many positive stories back then. Mostly scary stuff. I thought I’d end up in a wheelchair sooner or later. That everything would be awful. That no one would ever love me again, that I’d never have a happy relationship, and so on. I was also in an unhappy relationship at the time… but if you want to know more about that, you’ll have to check out my book – I won’t go into it here.
Anyway, I was definitely scared. But I got over that fear fairly quickly – mainly because I had doctors in my family who told me, „Hey, we know patients with MS who are much older than you. They sometimes need cortisone therapy, but otherwise, they’re doing well.“
Just a quick side note: medical recommendations have changed since then. It’s much better to start with a disease-modifying therapy (DMT) right from the beginning to prevent progression. So just taking cortisone isn’t the best approach.
Back to fear – I told myself: I will do everything I possibly can so that MS has as little opportunity as possible to impact or even destroy my future.
Dealing with Fear
I took a lot of action. And by doing so, I stopped feeling so helpless. Because for me, the worst feeling is thinking everything is out of my control – that I can’t influence what happens. But that’s not true.
With MS, you can take action. You can start an immunotherapy. You can exercise. You can eat well. If you smoke – you can quit. If you drink heavily – you can cut back. You can work through emotional issues so they don’t weigh you down. You can surround yourself with people who lift you up rather than drag you down.
There’s a lot you can do to move past fear. Or better yet – to overcome it. Because fear is something nearly everyone feels in the face of an uncertain future. It’s a normal reaction.
But I’ve been living with MS for over 20 years now, and I can honestly say – I’m doing well. I have the energy to make this podcast. I record the episodes when my kids are sleeping or are at daycare – I’m using my free time to do this. I haven’t watched Netflix in ages. I barely have time to read books anymore. And no – that’s not a complaint.
Fear of Democratic Erosion
Right now, there’s another kind of fear that’s growing for many people. It’s not about personal health, but about our shared future. The fear that our democratic values are eroding. That the tone is becoming more aggressive. That freedoms are shrinking in countries around the world.
And that fear is real. Because when democracy weakens, it often hits vulnerable groups first – people with chronic illnesses, like MS. People who rely on a just and supportive health system, on inclusion, and on fair policies.
This fear can feel overwhelming – but don’t let it paralyze you. You’re not powerless.
The best thing you can do is to engage. Talk to others – and not just those who already share your opinion. Step outside your social media bubble. Listen. Ask questions. Share your perspective. And yes – vote. Your voice matters. Even if you think it won’t make a difference – it does.
And beyond the ballot box: get involved where you can. Stand up for kindness, for openness, for a society where people with MS – and anyone facing challenges – are supported and included.
When I take action, I feel more grounded. Because I’m doing something. I’m not just watching the world unfold – I’m shaping a small part of it. And that helps reduce fear. It turns it into energy.
Fear and Professional Help
Now, that doesn’t mean I’m always totally calm. I get scared, too – like before MRIs. After giving birth to my first daughter, I noticed something odd in my foot. I thought maybe it was just the way I sat while nursing. But no – two new lesions showed up.
So yes – I was afraid. I was tense. I snapped at my partner, even though it wasn’t his fault. My daughter cried more because she felt the tension – even though I tried to hide it.
Fear is normal. But if it lasts too long, or starts affecting your life, please – reach out for help. Psychological support is available. Covered by health insurance in some countries. And even if in-person therapy isn’t possible at the moment – phone and online services are out there.
You don’t have to go through it alone.
Overcoming Fear
And sometimes, medication helps too. Sometimes the brain just isn’t producing the right chemicals anymore – it’s like a broken leg. You wouldn’t walk around with a fractured bone – you’d get a cast. The same goes for mental health.
Learn to tell the difference: when can I handle this on my own, and when do I need support? And if you’re a family member or friend of someone with MS – look out for signs. If they seem overwhelmed, gently offer help – even if they said no before. The time might come when your offer makes a difference.
Overcoming fear is a powerful thing. Be proud when you do it.
Success & Gratitude Journals
Here’s something that helps me personally: I keep a little success journal. Just a small notebook where I write down what I accomplished that day – even the little things.
It might be that I did the laundry. Cooked a healthy meal for my children. Wrote an article. Or just planted some flowers in our garden.
By doing this, I shift my focus away from my to-do list – which can feel endless and overwhelming – and instead look at what I have done. That helps reduce anxiety.
Another tip: before you go to sleep, write down everything that’s spinning around in your head. It brings calm. Then follow it with the good things from your day – your wins, your joys. That way, your final thoughts before bed are positive.
It could be something small: your child’s laughter. A warm compliment. A delicious croissant. It doesn’t have to be huge. You could call it a success journal or a gratitude journal – either way, it shifts your mindset.
You Are Your Superpower
A trainer once shared a beautiful metaphor with me: What’s the three-letter superpower?
It’s not the USA.
It’s YOU.
You have full control over yourself – over your thoughts, your actions, your habits. Sure, your body might act up now and then, but no one else can make your choices for you. You get to decide what you eat, whether you move your body, whether you listen to uplifting voices or give in to the fear.
And when you radiate something positive – you attract positive people. You create a ripple.
Fear might show up now and then – and that’s okay. It’s part of being human. But when it lingers too long, especially around things you can’t control, it just eats up your time. And life is too short for that. Even if we live to 100, there’s so much beauty out there to experience.
Conclusion
So don’t let fear steal your life. Focus on the good. Try some of the tips. Maybe one or two will work for you.
Exercise helps. Good food helps. Maybe even a scoop of chocolate ice cream.
Take care. Stay well. And try to make the best out of your life. We’ll talk again soon,
Nele
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