Writing with an invisible cognitive disability (what you don’t see)

When the brain doesn’t function like it used to, writing becomes an obstacle course. Here is a behind-the-scenes look at writing with a cognitive disability.

“See, there’s absolutely nothing wrong with your brain” a friend said when I sent him my rough draft of my first essay for Politiken about how ME has been neglected in Denmark. He was trying to give me a compliment. But I had to explain to him that it actually dismisses one of my biggest losses: a well-functioning brain. Because there is something wrong with my brain, and it doesn’t work like non-ill people’s brains do. He understood when I explained it to him. 

What would normally have taken me a week, took me four years. I started my writing process in 2016 and published my first essay in January 2020. In those three to four years I was researching and writing notes — but in a very different way than normal.

If I found an article that I wanted to read I would put it on my ‘to read list’ and wait for a day where my brain was somewhat awake and my energy levels decent enough to be able to read. I was only able to read for about twenty minutes at a time. Often I would only get through one paragraph and would underline or highlight if there was something important.

I use an app called MarginNote3 where I can import a document and annotate or highlight. I can print it as a PDF with all my notes so if and when I need to use information from the document, I don’t have to read it all over again, because sometimes it can take months before I can return to it and by then everything I have read is forgotten. 

The app also adds all my highlights to a separate document of my chosing. This separate document could be a document where it collects everything about the history of ME, or about sexism in health, or about biological findings of ME, or whatever topic I am researching. In that way I have collections of notes and highlights sorted under certain topics ready for me to use.

Getting through one article could easily take me several months depending on the level of comprehension needed and how important the topic was for me.  If I already knew the topic well I didn’t need a high level of comprehension, but a new topic took more energy and time.

Sometimes I could only read for five minutes, other times twenty. In some periods I could read for longer, while other periods I couldn’t even read a single sentence nor understand it.

After every reading session I would be in pain. Neuropathic pain. I have no clue as to why it hurts my body to use my brain (maybe neuroinflammation has a say here?), but it does, and it’s annoying to say the least. The pain is also what nobody sees. They just see a finished essay, but they don’t see the plethora of pain behind it. 

What is your experience of writing with a chronic illness or disability? Leave a comment below.

Back to writing: When it came time for writing I would already have a lot of notes, whole sentences, even, which I could copy and paste into a new document. In that way, I never started out with a blank page. I would then wait for an adrenalin period. These are periods where my nervous system turns to sympathetic mode or, as we ME peeps calls it, adrenaline mode. 

Adrenaline mode sucks. It looks like you have a lot of energy, but really it feels like you are standing on a treadmill at too high a speed and you have no way of getting off it, you have to keep running. It’s painful. It’s exhausting. You can’t sleep. Your brain is not clear because it’s producing impulses at warp speed. I would use these periods to get all my notes into one place and create somewhat of a structure. For some reason, adrenalin mode works well for this kind of work.

Then I would have to wait until my body was out of adrenaline mode for my brain to be more clear. Here, I would finalise my piece and proofread it. The first essay took a year doing this, but I’ve gotten better at editing with a limited brain and the other essays didn’t take as long. 

In fact, my process (and especially note taking) has become so good that the last essay I wrote about patient participation, I did very little new writing, I had so many notes that all I needed to do was copy paste and edit (a lot). 

For every published essay I’ve written, it has taken me six months for my body to get back to baseline. That’s the price I pay for writing and publishing. That’s what you don’t see. I have to push my body into a gear that it doesn’t have the capacity for. Although, I’m pleased to say, the process has gotten easier. 

Writing this newsletter is less heavy work. I know my audience (that is you) well and I don’t have to convince you of my point of view with steal-proof arguments, I don’t have to deal with disbelieving editors (I might tell that story some day), or nasty comments on social media. 

I hope someday that my body and brain will get well enough so I can write on a more regular basis. I have, what right now seems like, an insurmountable book project. It’s fully outlined, I know what I need to read and write, but I need to get better to actually write it.

Someday. I’ll be ready when that time comes. Someday, I’ll be able to ‘write on demand’ without pain. I hope so.

Which hacks have you found were helpful to be more creative, even while living in a difficult body? I’m always looking for inspiration.