Navigating creativity with chronic illness

Chronic illness is what opened my creativity, but it is also what shut it down. Here’s how I navigate creativity while living with chronic illness.

During my first years living with ME/CFS I started losing my voice. A cocktail of inflammation, weakened muscles, breathing problems, a heart beat gone amok, and a lot less physical energy available in my body meant my vocal chords couldn’t close properly and all the tension squeezed my throat so tight that sound would get stuck inside. 

When I went into a roughly two month period of remission I sought out a voice teacher to help me rebuild my voice, and to start singing again — something I’ve always loved and which soothes me.

Photo by Jr Korpa on Unsplash

After a few lessons she said to me: “You know, it seems like you have a lot to tell the world.” And I really did. All the loss, all the confusion, all the shame, all the grief, all the fear from getting sick and losing the life I had needed to be expressed.

So I started writing songs. And they were awesome, in my humble opinion. I felt deeply connected to them and like I had something important to tell the world. 

But then I started getting sicker and not only did my voice get worse, my brain also got worse and I had even less energy available to me in my body.

I never really thought about how much brain power and how much physical energy creativity takes. When I started getting sicker, I would try to get myself into a creative flow and not long after my brain would be on fire, I would have acid running through my veins, and the next day I would completely crash (what we call post exertional malaise or PEM). 

All the loss and grief also inspired me to begin writing creatively. I had always written for academia, but I felt drawn to expressing emotion and deeper states of human consciousness and experience. But as I got sicker, the words eluded me. I couldn’t hold one idea in my mind to combine it with another idea and my thinking became very one-dimensional, not ideal for creative writing. I could only write a few sentences at a time and then my brain would shut down. 

The whole experience of finding my creative spirit and then losing the body I needed to be able to produce my expressions threw me into a spiritual crisis. 

What was the point of this? It felt meaningless.

My spirituality is practiced through creativity. I feel a connection to something larger than me — I feel a purpose —  when I’m in creative flow, but this connection requires neurons firing at a healthy speed, when mine were slowed down due to low grade neuroinflammation and lack of physical energy being produced in my cells.

I found that there was a line. If my brain went below that line in terms of function, I was completely disconnected from my creative spirit and something larger. When my brain went above the line, I started sensing glimpses of connection again. I, naturally, prefer my brain above this line.

As my body turned towards severe ME I had to completely change the way I was being creative. Everything had to be slowed down and chopped into as small chunks as possible. I managed to write four essays that were published in Danish national newspapers this way. At first I spent four years researching (something I could have done in a week with a non-ill body). And then I started writing, one sentence at a time. As I couldn’t produce sentences on demand I would wait for my brain to be awake enough to create a sentence from the subconscious. I have written more about this process here. 

I also managed to record all my songs for my album by singing one verse or line at a time. I’ll write a separate post about how I managed that when I’m closer to release. 

While I did find ways to be creative despite a slowed brain and a weak body, I also had to find a whole lot of acceptance for not being as productive or as creative as my able-bodied peers — or as creative and productive as I knew I could be. 

This is still a work in progress. I grieve everyday my loss of being able to fully express myself creatively, to be able to produce my work and market it properly to a large audience. I grieve the loss of my once powerful voice which has become very delicate and difficult to work with — on most days I’m unable to produce proper sound — and I have lost large chunks of my voice like my once beautiful head voice and belt. 

The other day, my sister in law asked me if I could sing live some of the songs I have written as a kind of intimate home concert. She had heard the recordings and wanted to hear the songs live. I told her I wasn’t able to sing live as my voice goes hoarse after about one verse, and most days I can’t produce a sound at all in my singing voice — I have to wait for random good days and I have no control over this. I also can’t sit upright for a long enough time to get through a song. While I loved that she wanted to hear them live, it also saddened me a lot, because it reminded me of what I have lost.

I also grieve the loss of inspiration. Being isolated, not living life and being out and about creates a very small world. I often feel pidgeon-holed into writing about the same thing over and over again. I miss being deeply inspired. Exploring new worlds.

The medical gaslighting and general trauma that I have gone through has affected my creativity too. The shame from medical gaslighting and too many times of not being listened to or believed has caused a bit of a mental and emotional block for me. For a long time (and I’m still working on this) I felt like my voice didn’t matter, like it’s not a valid contribution to the world. This has caused periods of complete creative shut down. 

I find it ironic that chronic illness was what opened my creativity, but it’s also what has shut it down.

While I can find some element of acceptance in my situation, I do yearn for recovery or even just ‘getting better’ so I can express myself more creatively and feel a deeper sense of purpose. I have lots more to say. 

(H/t to

Kathryn Vercillo

from

Create Me Free

for indirectly inspiring me to write this piece.)

What about you?

What is the state of your creativity at the moment?

How do you navigate creativity when living with limitations?

How do you stay inspired?