Imagine that one day you couldn’t make it out of bed. Maybe you’ve experienced that, with something like the flu. It can be miserable, but you know you’ll eventually get better and resume normal life. But what if that wasn’t the case? What if you were never able to get back to running, cooking, or even climbing the stairs? That’s the reality for those diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This complex condition is a multi-symptom illness that is deeply disruptive and changes how a person lives their day-to-day life. They might experience crushing exhaustion and fatigue that’s not fixed by rest, cognitive impairment (“brain fog”), widespread pain, sensory overload, and more. (Learn about ME/CFS from Johns Hopkins Medicine.)
Sebastian Gisperg is a 23-year-old living with ME/CFS. He has been bedbound for nearly two years and spends 99% of his time in bed. Previously very active—before his illness, he was teaching people how to surf—making music is the only thing that Gisperg can still do. He isn’t able to do it every day, but the electronic music he makes has an impact on people. Gisperg recently hit 250,000 streams on his first album, and in a popular post on Reddit, commenters congratulated him on the milestone and thanked him for raising awareness about ME/CFS.
Gisperg loves to make music, but he has to be careful not to trigger Post-exertional malaise (PEM), which means overdoing his energy threshold. “The real hope I get is when I have rested enough,” he explains of his music making, “I get those 3-10% improvement where I am feeling better and I can at least make one hour of music or something again, or sit outside for 10 minutes. That’s what gives me hope and strength to continue through the dark days.”
My Modern Met spoke with Gisperg about life before his diagnosis, his life now, and the music that is helping keep him connected. Scroll down for our exclusive interview.
You’ve mentioned online that at 23, you’ve been bedbound for nearly two years. Can you share your story with us about getting your ME/CFS diagnosis?
Two years ago, I was teaching people how to surf in Sydney, spending hours in the ocean every day. Today, at 23, I’m 99% bedbound with ME/CFS. And it all started with what seemed like a regular flu.
The cruel thing about ME/CFS is that it most often begins with a simple viral infection, but you never recover from it. I was the most athletic I have ever been, and suddenly even going on a short walk would leave me exhausted for days. After two months of still feeling sick, I started to realize something was really wrong. This was nothing like me.
Shortly after a full crash from just a gentle stretch exercise, I knew my adventure was over. The next morning I booked a flight home to Vienna to get thoroughly checked out. I’m lucky to have doctors in my family, but even then, it took a year of countless tests and confusion before I finally received my diagnosis. ME/CFS. And that’s actually considered quick, as the average time is five years, simply because so many doctors don’t know the disease.
Your diagnosis and new reality led you to focusing on music. How would you describe your music to someone who has never heard it before?
Nowadays with being 99% bedbound, making music on my laptop is one of the only things I can still do that brings me joy. For me, music is all about evoking feelings: taking you back to your first love on a summer evening, or to the tragic breakup after. I want my songs to make you nostalgic for old memories with friends, but also hopeful for the good times ahead. Now with me being sick, music is a way to relive life and at the same time look forward. In my situation, that’s even more the case and I think you can really feel that in my music, me longing for life again.
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What was it like to hit the milestone of 250,000 streams on your first album?
Reaching 250,000 on my first album in a few months was incredible. I had no energy for promo, I just dropped it and posted about it on my socials. With my second album, things really started to spiral. A few posts on Reddit somehow ended up reaching over a million people.
I got countless comments of kind strangers telling me to hang in there, complimenting my music and my endurance, it was beautiful.
Seeing those numbers climb while lying in bed was very surreal. My body felt weaker than ever, but at the same time my music was out there, reaching people I have never seen before. It felt very empowering, like still being able to change the world all while being disabled. And just after six months of releasing my first song on Spotify, I am now close to my first million streams. All from my bed!
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What would you tell someone who is feeling like they aren’t being believed, whether it’s by loved ones or medical professionals, that something is wrong?
Not being believed by medical professionals or even by your loved ones is incredibly hurtful, but it sadly is the universal experience of having ME/CFS. This comes from decades of stigma, sexism, and underfunding. If you know something is wrong with your body, trust yourself. Be persistent, and seek out the doctors who truly listen. Don’t waste your energy on those who dismiss you. You deserve care, support, and to be taken seriously.
Sebastian Gisperg: Instagram | Fanlink
My Modern Met granted permission to feature photos by Sebastian Gisperg. Interview has been edited for length and clarity.
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