“Get well soon”: How we should reframe conversations about chronic illness

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 t