It took me more than 30 years to find my place in the creative world — and then chronic illness hit
Isn’t it ironic? Chronic illness seemed to have shown me a way towards my place in the creative world, but it’s also what has made creativity so much harder.
My debut album will drop on August 29! You can presave it here • My new single is out! It’s called Where Cold Hearts Go To Pray and is a song about escaping the emotional and physical pain of chronic illness. Listen and read more here, or listen while you read:
My six and a half years older brother had just won second place in the European Steinway piano competition. We celebrated at the home of family friends and everyone asked my brother to play a piece. I don’t remember what he played, but it was flawless, dexterous and most likely Mozart or Beethoven. He was only ten.
When he was done, and while people were still clapping, I got up, grabbed my father’s hand and dragged him up to the made-up stage in the corner of the living room and I started belting “Langt oppe bag Norges kyster,” a Scandinavian folk song reminiscent of Romeo and Juliet where a widower’s daughter and a sailor drink poison in the end to be together.
I was enjoying myself, but everyone started laughing. They were rolling around on the ground. Slapping the floor with their hands.
I forget this memory, but I saw it on video in my twenties and I realised that was the day I decided it was unsafe to express myself creatively.
I have written songs since I was twelve years old, but I always felt embarrassed by them, ashamed even, like I was not supposed to create music. I was good at playing from sheet music — even though it bored me — yet I longed for a creative life.
I don’t remember when the last time I picked up my flute was. I think it was in my late teens. I had attended efterskole, a kind of creative boarding school before high school, where I played flute in a band and in our annual musical, and sang in the choir. We were a group of students who were serious about music and our music teacher helped us to prepare for musical college.
One of the requirements was ear training — something I sucked at. At that time, we had a computer program that would play random notes and we had to guess which interval it was playing. I couldn’t get anything right and those blip blip blips of random notes didn’t make sense to me. Again, here was proof that I wasn’t meant to have anything to do with music.
My grandmother died in my late twenties, and my family and I attended the funeral. I was the only one singing the hymns — well, I and the priest — and after the service my grandfather told me: “You have a beautiful voice, I hope you do something about it.” I loved singing, and my favourite pastime was to sing songs while I accompanied myself on the piano (I had taught myself). I did this with closed doors, because it was just a hobby — not something I felt I was meant to do. Something sparked in me when my grandfather told me my voice was beautiful, but it would still take a few more years before I did anything about it.
I remember, in my early thirties, when I was living in Tanzania, I would visit my friend, a successful singer-songwriter and musician, and we would sit in his studio and listen to his songs, commenting on this and that, and I felt strong pangs of jealousy. I longed for a creative life, yet I had decided long ago that I wasn’t creative.
When I became ill with ME/CFS, also in my late twenties, my throat started to hurt every time I used my voice. I sought out a voice teacher a few years later — when I had returned back to Denmark from living in Tanzania — and during our first lesson, my voice teacher said: “I can see you have a lot to tell the world.”
That did it! I had finally gotten the nudge that I needed.
I went home that day and I wrote a song. It sucked, but I was hooked. From setting up my online coaching business and learning marketing and sales, I had finally learnt that skill is developed, it is something you work on, one step at a time.
Yes, some people are born with a natural talent, like my brother who played flawless Mozart at the age of ten and played in adult jazz bands by the time he was fourteen, but for the rest of us it doesn’t come as easy and has to be worked hard on (this is not to say my brother didn’t work hard, but he was at a completely different level).
I took singing lessons, I played the flute again, I studied songwriting and wrote more songs and at some point I noticed they were damn good. I had finally found my place in the creative world. This was my thing. And I felt good at it.
But just as I was getting into it — practicing my etudes on the flute, singing scales and doing various vocal exercises, training my ears with better software, and learning composing and accompaniment skills — my body started to deteriorate quickly and less than two years later I was mostly bedbound. I haven’t been able to practice since.
It’s difficult for me to express the grief at having found my thing in life only for it to be taken away. While I can still write and record songs, my ability to improve my musical skills is gone. My voice only opens up a few times a year and I use that time to record. My voice is rarely good enough to actually practice and move outside my comfort zone. And I can’t hold the flute anymore. While I try to do a bit of ear training here and there or listen to YouTube videos with music education, I forget everything again — nothing sticks with this crappy brain.
Isn’t it ironic? Chronic illness seemed to have shown me a way towards my place in the creative world, but it’s also what has made creativity so much harder. I hope one day for my body to be better and at a higher level of functioning so I can continue my creative journey. I fully believe this is possible.
Tell me…
How has chronic illness changed your approach to creativity?
How does chronic illness limit your creativity?
What are your hopes for the future?
I’d love to know your thoughts!
Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.
Did you miss?
I wasn’t suicial, I just wanted peace
I stay sane with these journaling techniques
How I created my album from bed and wheelchair
Meditation: Preparing your body and mind to rest
Are you looking for all the meditations? Click here
Are you looking for all music? Click here
My new single is out! It’s called Where Cold Hearts Go To Pray and is about wanting to escape the emotional and physical pain of chronic illness
I wrote this song for all my chronically ill and neurodivergent peers, all of us with bodies and minds that don’t fit in, who’ve had to figure out how to live in a world which is too loud, too aggressive, too broken and not suited to our needs. This is our resting place.
All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp to support the cause.
Like yourself, I didn’t believe myself to be creative. A belief projected on to me by my mum -that I now see as far more widespread than just parental.
My ancestral belief that ‘everything has to be hard’ certainly hasn’t helped either.
In many ways, chronic illness has unleashed my creativity. I had lost sight of my love for writing and I certainly didn’t grow up with any connection to just how good I was at it. (Apparently all my friends saw it and remembered, told me I wrote poems - but I can’t remember any of it. I only remember my friend being super talented at writing stories I thought could be books and creating poem after poem - but there I was, projecting. And seeing everything as outside of myself.)
Because of chronic illness though, I’ve had to learn to work in flow with crrativity. See myself as a cyclical being. Connecting to the seasons of the cycle.
Everyone looks at me blank when I talk about this but I’ve only ever been able to do what I can when I can. And all my creative endeavours come from this place - a place where I can also tap into guidance.
In the long term, I create not only more this way but it comes from a deeper, more intuitive place.
It’s the unlearning and relearning, healing and letting go of so much to make space for the new - and taking up so much space - that has been the greatest challenge to get to this point though.
I didn't think I was a very creative person. I have always known that my mother IS a creative person, but I was never able to do the things she did. Or if I tried, I wasn't very good. (Never mind she had decades of practice when I tried it.)
I got diagnosed with Dysautonomia, POTS, OH, and SFN in 2018. I had been deteriorating for years at that point and couldn't stand for long, had difficulty walking, and no longer worked. I stopped trying to do things when COVID trapped everyone inside, so my functioning got yet again worse. In 2021, I could not stand, but I could sit and write; I could not walk, but I could sit and write.
I started writing as a hobby. I didn't think anything would really come of it. It was something to do. But it fed me in ways that I'd felt in years! I found a voice and an outlet that were so freeing and filled with possibility. I published my debut novel in 2024 and plan to publish my second novel in October of this year.
Writing freed me from the many ways that illness trapped me.