10 years ago today I turned 16 and a half and got diagnosed with autoimmune hepatitis. It's a rare autoimmune disease where your immune system attacks your liver. A decade on, my immune system now also attacks my bile duct (autoimmune cholangitis), my intestines (celiac disease), and the muscles in my eyes (ocular myasthenia gravis). Throw osteoporosis, ME/CFS, and fibromyalgia into the mix and that's me today on my 26.5th birthday. Cue (gluten-free) cake.
I really went back and forth about posting this because I feel so much shame about being disabled and drawing attention to my disabilities and limitations. I either feel like it looks like a pity party, a cry for help, or a morbid humble brag. But, especially as my health has deteriorated over the past three years and isolated me more and more, I’ve found the individual conversations that I’ve had to have with people where I “come out” as disabled to be stressful and uncomfortable. They make me want to address being disabled head-on once and for all. So I feel like today's the best excuse I'm going to get to talk about the internalised ableism and shame that weighs on patients like me and exacerbates our conditions.
I am so uncomfortable talking to people about being sick because the whole ethos around sickness is to avoid it. You can't reply to a “get well soon” with a “no I won't!” That’s defeatist. That's giving up. For 10 years, I've been hell-bent on demonstrating resilience and independence, so I pushed through, telling my body yes when it was saying no. Getting back on the horse after a fall is a big win to most — it’s celebrated, it’s heroic, but it’s also a ticking time bomb. I found though that after each push, I felt a little bit less able. Soon I started fainting in public, on subway platforms, at job interviews! Then I started needing whole days in bed. Then it was weeks. Then months. Last October, I woke up but, even with all the drive in me, I couldn't get up. I was spent and I'm still spent. I’ve been 90% bed-ridden since.
First you deny it’s even happening. You push through it. You fight it and hate yourself for being flaky, wimpy, weak. Then you get strategic and find ways to finesse the situation. “How many days should I rest to record a podcast episode?” “How many recovery days do I need if I go for a walk?” “Should I sign up for something a month from now or is the risk of me being out-cold on that particular day too high?” “How easy would it be to cancel this commitment if I can’t get up that day?”
Sometimes I do something small one day and pay for it for weeks. Other times, I can get through a day with multiple errands and only need a few days of recovery. You tweak and experiment with your limitations until you're so exhausted that you're just bored and sad. Then it sinks in that this is it. Anything you do is going to need who-knows-how-long of rest to prep for and it's going to knock you out for who-knows-how-long after. You’re never going to find the formula to calculate the number of recovery days you need. You’ve tried all the supplements, the teas, the homeopaths. At the end of the day, you're not hanging with friends whenever you like anymore. Or eating what you like or doing what you like. It’s lockdown, but it won’t end with the pandemic.
These past six months (but really ten years) I've cycled through those stages of grief. It's not a linear process. I get angry a lot. I'm often furious at myself and hate my body for being so uncooperative. I internalise a lot of ableist, capitalist ideas that equate my value as a person to my ability to generate an income or be of service. I have found it very difficult to justify existing when I can't work. It's lonely and uncomfortable to explain. The question I often get is “so what are you doing to get better?” In truth, I’m out of drugs now. We’ve tried everything.
My hepatitis is so refractive that most of my specialists have told me this is just my life now. I’m prepping to try a monoclonal antibody treatment used with lupus and cancer patients, but I will be one of the first 50-100 autoimmune hepatitis patients to try it. It’s high risk with a small chance of working. And what do you say to someone who tells you that? How do you carry on a conversation when someone tells you something that pessimistic? “Oh okay, well hope it works…” The immediate response is pity, which is the last thing most disabled people want. What we actually want is people willing to exist in the discomfort with us, to take in, for a minute, that it’s not going anywhere, you’re not getting well soon, but that not being okay is okay.
I'm not near accepting my disability but I'm at a level where I'm able to stop trying to superficially “get well soon.” By rejecting “get well soon,” by allowing myself to just be sick, by not panicking about how long I'll be stuck like this for, by acknowledging the awkwardness of bleak prognosis conversations, by giving my disabilities space and time, and crucially, by getting comfortable with the limbo and discomfort, I'm getting well.
Ever since I started illustrating and selling my art, I deliberately remind myself that there's no pressure and no expectation. I have to tell my type-A brain that my value isn't linked to sales or likes. I feel the need to flag that to anyone who starts thinking that it’s great I’ve found a way to make money while disabled. I shouldn’t be praised for that. I should be praised for the things no one sees: for the rest and the patience and the boundaries I create for myself. Every mainstream disability narrative spotlights and celebrates overcoming it — the Paralympics, news stories, commercials. Disabled people are often only celebrated in the media when they subscribe to the overcoming narrative, not the accepting narrative.
When I was 16, I made a bucket list of goals to achieve before I turned 21. Get my driver’s license (fair), go to Harvard (eye-roll), get a distinction in grade 8 tuba (I’m not even kidding). Each was clout-driven and based on another person’s estimations of me. I set the goals to prove that I could do anything even with autoimmune hepatitis. I saw my illness as something to overcome. No one likes to tell a kid that they can’t achieve things because they’re sick. No one should tell a kid that. But I wish I had grown up in a less ableist environment where I didn’t feel so much pressure to “show” I was one of those disabled people who could “make it.”
I often find myself resenting the deterioration of my health and the limitations on my mobility, abilities, and responsibilities. It took me ten years to end up this sick and gnarly, but it also took me ten years to work out the secret all along was to genuinely accept my disability and limited lifestyle. Practically, I find the way to tangibly do this is not to resign myself to a bed-ridden lifestyle but instead to appreciate the opportunity I now have to pursue art and writing, things that make me happy intrinsically.
I'm realising right now while writing that I have thought so much about the past ten years that I haven’t even realised that ten years from now, when I'm 36.5, I'll be reflecting again. By 2031, I don’t want to be stuck in the toxic paradox of being a chronically ill person “getting well soon.” If I'm even worse then than I am now, I just want to have normalised a schema where I'm content with my state.
It's hard to discuss things like this without sounding trite or hearing the tiniest violin. I hope to write more now that I’ve got the ball rolling. I plan to delve into specific issues — for instance, I haven’t even touched on the financial privilege needed to be able to rest while disabled — but for now I’ll leave it here. With no big finish, no comfortable conclusion, just a nod that publishing this essay isn’t going to suddenly make me feel validated and vindicated, but that I’m not weak or exposing too much of myself by addressing a part of my identity that has made me feel “less than” for the past decade.
These books also helped me come to terms with accepting my disability and may help you too:
When the Body Says No: The Cost of Hidden Stress by Gabor Maté (2003)
The Subtle Art of Not Giving a F*ck by Mark Manson (2016)
Quiet by Susan Cain (2012)
Mortality by Christopher Hitchens (2012)
The Yellow Wallpaper by Charlotte Perkins Gilman (2003)
Zooey by J.D. Salinger (1961)