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You may have heard or read before that multiple sclerosis is the disease of a thousand faces - for example, in this KKH podcast. The fact is: Multiple sclerosis is a disease that progresses very differently in each person. About 250,000 people in Germany have MS. I am one of them.
But what is MS anyway? MS is a chronic inflammatory disease of the central nervous system. The cause is still unclear. MS is not curable, but with modern therapies, the course of the disease can be slowed down in most cases. Many people with MS are able to lead a fulfilling life - with and despite the illness.
I received my diagnosis in the fall of 2013. I was about to complete my training as an event manager and at the beginning of my professional life. Work is a good keyword: I worked. Always. And a lot. I constantly felt the need to perform better. To be better. To be faster. And then came the diagnosis of MS - and with it a major shock. MS, I had heard of that before. Isn't that the disease where you immediately become a nursing case and end up in a wheelchair?
Fears about the future mingled with great uncertainty. How would things proceed now?
For several years, I secretly lived with the diagnosis, only telling my closest confidants about it. I was afraid of being judged or even pitied. I didn't want to be treated differently; I just wanted to be myself. And so, I remained silent. I tried to schedule my doctor's appointments in a way that no one at work would become suspicious. I tried to hide the injection sites on my arms whenever I had received another infusion with cortisone to slow down a flare-up. I stashed the medications at the very bottom of my carry-on during business trips - so that no one would notice anything. It became a game of hide and seek, and a rather exhausting one at that.
Only after three years did I decide to be open about my illness. Until then, I had already experienced several bouts of illness, or acute phases of inflammation. I repeatedly struggled with numbness, fatigue (chronic exhaustion), abnormal sensations, pain, and dizziness. But after three years, I realized something important: while these symptoms do limit my daily life, I can find a way to manage them. My MS seemed to be taking a mild course. Let it be mentioned here that, of course, not everyone with MS experiences this. There are cases where a person ends up in a wheelchair within months of diagnosis. And these are also people and destinies I do not want to leave unmentioned in this article. There are people who lose their jobs, friends, and family due to MS. People who end up in poverty because of MS, and people who fall into a deep depression.
I too have repeatedly struggled with dark thoughts, and perhaps I will never be completely free of them. But I already knew back then: Keeping the illness a secret wouldn't make it better. So I decided to talk about it - in such a way that the whole world would find out. In February 2017, I launched my blog "chronisch fabelhaft," where I write about my life with the illness and provide support. Initially, I mainly felt the need to exchange experiences and feel like I wasn’t alone - now the blog is one of the most successful German-language MS blogs. I had previously saved up hard-earned money to finally experience a big dream: A world trip - with MS, and yes, perhaps even because of MS. Because MS made it clear to me: We have only one life. We make decisions every day... and for me, it was time to put myself and my well-being first.
Since the year 2017, when I launched my blog, quit my full-time job, and started traveling around the world, much has happened: I am a freelance author and blogger and have published three books on the topic of multiple sclerosis. Meanwhile, a podcast, an Instagram channel, and a YouTube channel are part of Chronic Fabulous. I also trained as a yoga teacher and created an online course for people with MS, introducing them to meditation and yoga as practices for stress reduction. In the fall of 2019, I founded "Healthy Content. Sick Ideas."—an agency for patient influencer marketing, for which I was awarded by the Federal Ministry for Economic Affairs and Energy. I still live location-independently to fill my Instagram channel with photos of beautiful places and travel the world (though currently less). I work where the perfect conditions exist for me... and that's not always Germany. Both of my companies are completely online-based.
But not only my way of working, but also my attitude and my health have changed in recent years. I pay more attention to myself, have developed a much finer sense for my own body. I know how important my mental health is, and I regularly work on my personal development. I have made my health an absolute priority—and it pays off. I have been relapse-free for 4 years now. I am not healthy, I will never be—but I now focus differently and appreciate the days when I feel good much more than before. And I know that I am allowed (and need) to take a break. That not everything has to be perfect. And that life can be damn fabulous—even with multiple sclerosis.
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