On Chronic Illness

It's been 20 years since my trip to South America and it's this time every year when I contemplate whether many occasions of sickness over 4 months (including food poisoning, altitude sickness, pneumonia, and infected bug bites) became the origin story to the fucked up but medical mystery gut illness I've had since then, and whether that caused a ripple effect leading to other illnesses. Even if that's true, I don't regret travelling to an amazing continent full of wonderful people and magical landscapes, as I could have gotten sick in some other less interesting way anyway.

Those 20 years have been filled with some decent medical encounters and a whole lot of shitty ones, seeing healthcare workers who aren't terrible but also haven't tried that hard to help me when nothing is found to be officially wrong with me despite symptoms that match or exceed the severity of actual illnesses. And okay, a couple terrible healthcare workers. I'll never forget the nutritionist, who upon chatting about FODMAP and all the other gut related things I've tried over the years suggested that perhaps I needed to be more positive, like her friend who had cancer and believed in the power of positive thinking and no longer has cancer. I should have been given a damn medal for not standing up and screaming at her OH RIGHT MAYBE MY MOM SHOULD HAVE POSITIVE THINKING-ED HER BRAIN TUMOUR AWAY AND THEN SHE WOULDN'T HAVE DIED, HUH KAYLEIGH? but instead I left there and never returned to that clinic.

I have learned many things about myself over the years (and no this is not the part where I say it's the silver lining of having chronic illnesses, because fuck that shit) and my pain tolerances, that I can work through several types of pain but not others, and that sometimes changes daily. Some have called me resilient or brave and I usually reject the premise of those words in that context, because I'm just trying to live my life. I don't have intergenerational trauma, didn't live through a war, genocide, famine, poverty or a natural disaster. My life has been a road full of many potholes, but I'm not some kind of hero for living with chronic illnesses.

I have learned that the vast majority of people don't really want to know how you are when they ask that generic question and you answer it truthfully until the point that they stop asking. I've also learned I get pretty angry at unsolicited medical advice, even if there may be some truth or possibility to it. I've learned about the inextricable link between physical and mental health and that, shockingly, the body is an interconnected thing and everything affects everything else when it comes to pain, anxiety, etc.

I've also discovered what chronic illness does to limit my desire to climb an organizational ladder. I used to want to be Vice President in Charge of Something Cool and now I just want to work somewhere that recognizes I have good days mixed with bad days but can still be a creative and contributing member of that workplace. I don't think that's a failing, but rather a more realistic world view that's taking into consideration what it's like to have a full time job while also having full time illnesses. Also that work doesn't have to be the only thing in your life, much as capitalism would have you believe, even if it is the thing that helped to define you.

The last few years have been incredibly challenging for all of us for a variety of reasons, and to not end up hating everyone and everything I need to hold faith in the fact that masks do work and I appreciate those who wear them. I went 2 years avoiding covid and when I did get sick in September 2022, I went back to work a few weeks later and wore a mask everyday. I shared air with colleagues who got covid and patrons who either had covid or other very coughy illnesses, but didn't get sick again between October and March, even with my very rundown body.

As someone who may now be experiencing long covid, I have so much empathy all those who are struggling with long covid and other chronic illnesses - I always have, but that empathy has skyrocketed for all the new people who feel like they are being forgotten by society, needs pushed aside over the desire to have everything be normal again. Perhaps my increased empathy is trying to compensate for the decreased empathy I see all around me in the world. So many people are hurting right now, and the only thing that seems to have an effect is when celebrities get sick too or we talk about a mass disabling event disrupting the economy, because capitalism. I just know that my level of complete exhaustion after experiencing insomnia since September, having a constant headache, worst gastro stuff than usual, all sorts of unexplained pain in addition to my other unexplained pain and feeling like a cement truck has poured cement over me for most of the day is VERY TIRING and it's keeping me from the desire to go for dinner or on vacation.

You might think I have some wise solutions for the clusterfuck we find ourselves in and I do not. Just appreciation for the people still following covid precautions, whether that's to avoid getting multiple infections that lead to long covid, because you already have long covid or other illnesses and disabilities and can't risk making those worse, or you're just a good human. Thank you for continuing to care about yourself and those around you, even when it feels completely futile. And appreciation to the healthcare workers, the scientists, the advocates continuing to fight for all of us during this pandemic.

This is a repost of an essay originally published on Tumblr on March 14, 2023.