Writing and illness have always been interlinked for me. I started my first (very bad) fashion blog in 2009 as an escape from depression and the constant sickness lupus brought. I’d recently had to quit my job as a nursery teacher due to my crap immune system and survived a suicide attempt so was rebuilding my life but at a loss with what to do. I knew I wanted to be a journalist, but I didn’t know how, so to paraphrase Hamilton, “I wrote my way out.”
As I grew both as a person and a writer and began to accept my illnesses, I no longer wanted to escape from them. But, whilst I’d accepted my illnesses, the one thing I still struggled with was my limitations; little did I know that would change.
I turned my blog it into a place where I could write about my experiences and in turn give others a voice. I gained a community and support from others in the same boat, which gave me the confidence to launch my career as a freelance writer and journalist focusing on health, chronic illness, disability rights and drawing attention to discrimination and injustice disabled people face.
I certainly had enough topics to write about: lupus, depression, dyspraxia, rheumatoid arthritis, celiac disease, asthma, osteoporosis, chronic migraines, anxiety. Add onto all of those two mini strokes, almost dying of sepsis, a hysterectomy at 28, and a still undiagnosed reproductive health problem that currently means I’m undergoing medical menopause.
My failing health gave me more to write about, but it also meant I struggled to write on my bad days. My arthritis and lupus would cause my hands and wrists to swell and seize up. My mental health could be so poor that I couldn’t get out of bed, never mind write. I can be overwhelmingly exhausted thanks to chronic fatigue and develop something known in the chronic illness community as “brain fog,” where you just can’t keep thoughts in your brain, it feels like your head is stuffed full of cotton wool.
My failing health gave me more to write about, but it also meant I struggled to write on my bad days.
As a freelance writer, I’ve had to learn when to take breaks and stop putting so much pressure on myself to always be pitching when my body is telling me otherwise. But I when I went fully freelance I learnt that this just wasn’t sustainable and would lead to more days off than days working as opposed to the other way round. I was used to be feeling ill because of my lupus, with a looming migraine and my hands in arthritis gloves and would still be at my computer because of the pressure I put on myself.
Not listening to my body only makes it worse. Headaches and brain fog develop into migraines, joint pain gets worse, and spreads throughout my body. The fatigue keeps battling with my stubborn nature until I’m sobbing with exhaustion and pain. If I battle through I make myself more ill and the work usually needs a lot of edits because of how ill I was when I wrote it. But, what can I say, I’m strong-willed.
I know the obvious solution for all of this is to rest, but as a freelance writer, if I don’t work I don’t get paid. Another consequence of me not writing means that my story doesn’t authentically get told. The main reason I push myself is that if I’m not working I feel guilty. In a world where your worth is based on how productive you are, it’s easy for a disabled person to feel useless and like a burden. So, I push myself.
But I’ve learned that instead of powering through all guns blazing, it pays to forward plan. As I know how forgetful I can be, I constantly make notes on my phone with article ideas. When I have a breakthrough on how a part of a piece should go, I add to it. On days when my hands hurt too much to write I use voice to text software and apps such as Dragon or Evernote. My single greatest investment has been a bamboo bed desk, which allows me to work from my bed with my laptop at an angle so I can lie down whilst writing. It even has a cup holder and little drawer for my snacks!
In a world where your worth is based on how productive you are, it’s easy for a disabled person to feel useless and like a burden.
Because of my terrible memory, I rely on setting reminders on Alexa to be sent to my phone to email editors and add to articles I’m writing — though I sometimes forget I’ve set them and when she suddenly announces I need to do something I think she’s a mind reading witch. I’m also massively old school so forever scribbling notes to myself that only I can understand.
As freelancing is my sole source of income, some days I don’t have the luxury of just not working — but the nature of my career means that I can choose when to take it slow, something I’m always thankful for. It means that I never take a good health day for granted and do as much as I’m able to and when I begin to feel the tell-tale signs of a flare — depending on the condition this can be aching hands, sleepiness, pelvic pain or headaches — I’m quick to head it off with support bandages, splints, medication or my trusty TENs machine.
My working week isn’t structured the same as most, I typically work from 9-12, have an extended lunch break and take a nap, then work for a couple of more hours. On bad days I can work the absolute minimum, which will be maybe one or two hours, and on better days I can do an almost full day. But it’s important to never push myself too far.
The nature of my career means that I can choose when to take it slow, something I’m always thankful for.
The most important thing to do when I’m having a bad day is to be kind to my body. Yes it can be revolting against me, but fighting back will only make it worse. On painful days I cut myself some slack and take it easy. Sleep is not the enemy. After living in this body for over three decades I know that instead of hating it, I have to love and appreciate all that it gives me. My body may be falling apart but it’s also resilient. Despite the pain it allows me to take my beloved Dachshund puppy on walks every day. I have a creative mind and the determination to share my stories, no matter what.
It can be hard, thanks mainly to my stubbornness, but accepting and setting my own pace has been vital in my growth as a writer. If I hadn’t learned to slow down I don’t think I’d be where I am now. I’ve learned that you don’t have to stop writing when you’re disabled, but you do need to listen to your body.
Rachel Charlton-Dailey is a freelance journalist and writer who specialises in health and disability. Her bylines include HuffPost, Metro UK and The Independent. She is the founder and Editor-in-Chief of The Unwritten, a new publication for disabled people to tell their stories. In her spare time she can be found (slowly) chasing her dachshund Rusty around the North East English coast.