I got diagnosed with lupus in 2015.
It didn’t really happen the way you’d expect. I went in to the dermatologist complaining about itching legs. When I say itching, I mean I scratched those fuckers so hard I left bloody tracks in my wake. I still have a scar on my right shin.
I also had a minor concern about rosacea and was hoping they’d prescribe me some kind of cream.
The dermatologist, however, took one look at my face and said “that isn’t rosacea.”
He confirmed the not-rosacea of it all with a loupe, then told me he had a suspicion, and he was going to run blood tests to be sure. But that he didn’t want to say what that suspicion was, because he didn’t want me googling and freaking myself out.
Obviously, my brain went to cancer.
In my defense, it wasn’t a totally wild assumption. Three years before, I’d gone through a horrible ordeal where I was told by an oncologist that I almost certainly did have cancer—lymphoma, to be precise. I had spent the past three months bedbound, exhausted and feverish and losing weight. My joints ached. I felt swollen, like a poison ivy weal about to burst.
And I had this lump in my armpit the size of a strawberry.
My blood work kept coming back saying I had inflammation all over my body. The doctor biopsied the lump and told me that once the diagnosis was confirmed we’d cut it out and talk about chemo.
The biopsy came back totally benign—at which point the doctors shrugged and threw up their hands and told me my problem was probably anxiety.
Eventually the symptoms went away on their own and I went back to work and life churned aggressively on.
I had a few more episodes like that in the intervening years. I ignored them and stayed away from the doctor. The last thing I needed was another round of humiliation—another reminder that my brain hated me and wanted me to suffer.
The dermatologist called me a few weeks later. I knew it was bad that they were calling me instead of messaging me on the patient portal. I answered the call outside, because I figured the fresh air would probably help.
“Your ANA is positive,” the doctor said. “Very, very positive. Sky-high. And you are positive for antibodies that usually go along with lupus. So I think that’s our answer. You have lupus.”
I got a rheumatology referral, which confirmed the diagnosis. The following years were full of random flares: mostly skin and arthritis related, but once I had pleurisy and once I had pericarditis. Another time I got a blood clot in my ankle. Then I miscarried two perfectly-healthy IVF babies because my stupid lupus-infested immune system decided to attack them, my traitorous body murdering my very-much-wanted children. When I finally got pregnant for real, I had lupus-related kidney issues in the third trimester.
What is truly nuts is that this is considered a mild presentation.
Three months of horrible cancer-like symptoms—symptoms that, in retrospect, had almost certainly been a lupus flare—and nobody had thought to test me for autoimmune disorders. Not my GP, not the oncologist, nobody.
Not until I saw a skin doctor for my “rosacea.”
It’s not just lupus, by the way. Autoimmune disorders tend to cluster together. I also have Hashimoto’s hypothyroiditis (like 1-2% of AFAB people, which is a relatively high number as chronic illnesses ago) and Sjögren’s syndrome, which causes really dry eyes/nose/mouth/generally parched mucus membranes and stomach troubles.
Like this wasn’t already a perfect buffet of bullshit, I am the lucky owner of an ADHD diagnosis, bipolar disorder, panic disorder, OCD, and endometriosis. I also usually count infertility here too, because my infertility was caused by my lupus and required a lot of very expensive medical treatment and the kind of sadness and grief that keeps you in bed for weeks.
As one of my close friends used to say, “you need an organ replacement for every single organ.”
Basically, yeah.
So how do you write?
This is the real question. You’re sick, you want to lie in bed and die tbh, and on top of that you’ve got debilitating ADHD that makes focusing for longer than five seconds feel impossible.
The answer is….
…sometimes, you don’t.
It’s okay to prioritize yourself first. In end-stage capitalism it can feel like the grind is the only way forward. Like if you stop churning out words for five seconds you’ll never finish that book/get an agent/get a book deal/get another book out/keep readers/continue your career/blah blah blah.
But let’s take a look at my track record.
2019 - The Fever King
2020 - The Electric Heir
2021 - A Lesson in Vengeance
2023 - A Shot in the Dark
2025 - The Love Variations (working title)
They say you gotta do one book a year to stay relevant, but as you can see, that is definitely not happening for me.
I spent that 2021-2023 period disabled by depression, for the most part. And anxiety. I had two lupus-related pregnancy losses right after ALIV came out and I couldn’t write. I couldn’t get out of bed, honestly. Writing no longer mattered. My career didn’t matter. Only my lost children mattered.
Same thing after ASITD, but this time it’s ADHD and lupus.
The anxiety over losing my career is real. I’ve seen my engagement drop on instagram. I no longer post on twitter/tiktok because the effort feels insurmountable (and because twitter sucks now). My subscriber count here is stagnant. My sales on ASITD did not even come close to the ones for ALIV. And I worry that my publisher is sick of my bullshit and ready to drop me the second I finish my contracts.
But how much of that anxiety is actually real? And how much do social media metrics actually matter? I have no idea.
But I know the value of self-care and putting myself first. My career might slow down because of disability and mental health, but if I didn’t prioritize those things first, I wouldn’t have a career at all.
Okay cool but what are your actual work tips?
Nevertheless, at some point, I really do feel like I need to write.
So here are my hot tips for continuing to write through disability.
Pomodoro. Alternatively, writing sprints. Set a timer for 20 minutes (or 15, or 10 - whatever you can manage) and try to see how many words you can get in that amount of time. You can do this solo, but you can also do it with writing friends or critique partners or discord people.
Fresh scenery. If you are able to get out of the house, I often find that mixing up my writing location can help me focus more. I will try out a coffee shop or restaurant and try to work there. If leaving the house is not possible for you, try writing from a different spot. I usually write on the sofa these days, but sometimes I try to write at the kitchen table, or in my underused office, or even in bed.
Reward structure. I’m really into Baldur’s Gate 3 right now, so I try to make myself get to x words before I get to play (and I can only play for y minutes).
Community support. There are so many amazing communities online for disability peer support. A support network is vital for taking care of yourself and finding those who really understand what it’s like in the disability trenches. There are also many disabled writers who get the combo of disability+writing. Tapping into that community can help.
Speaking of community…it can be hard to find those people sometimes.
So if this describes you—if you are a disabled writer—comment here on this post. Get in touch with other commenters. Form your family, make connections, get in each other’s DMs and discords and slacks.
And know that I—all of us—are rooting for you.
What I’m reading right now: The Pairing by Casey McQuiston
What I’m playing right now: Baldur’s Gate 3 (still)
What I’m listening to: “American Teenager” by Ethel Cain
What I’m writing right now: The Love Variations and revisions on The Girl That Time Forgot
What I’m cooking: This roast chicken with schmaltzy cabbage from Smitten Kitchen
Social media engagement sucks for everyone right now, even for people who have tens of thousands of followers. I have depression and anxiety and a full-time non-writing job that’s mentally draining and demanding. Some days just can’t be writing days.
I have an autoimmune disease too. And am stuggling to find the way back to my writing. I did finish my first pass edits for my YA gothic horror coming out next yest but it was a struggle.