We live in a world that values professionalism, polish and able-bodied standards of productivity and excellence. Having a chronic illness has, whether I always like it or not, taken my ability to conform to that standard at all times.
Some days, I’ll dazzle your socks off with my entrepreneurial ambition. And others, I will need to cry. You may be thinking, “Everyone needs to cry. Nobody keeps it together or wants those mainstream culture pressures on their life.” What if I told you there’s a different kind of falling apart? Because I’ve lived in a body that was well. And this is a different kind of crumbling. Of surrender and abandonment. Of feeling the flimsiness of life and how easily it can leave you behind.
I hope that eventually, I will not have any symptoms of Lyme disease. I’m getting closer to that goal every day. And I’m also growing more confident, identifying as someone with chronic illness because the social experience of living this decade is not something I will leave behind. I carry it with me, and it continues to teach me how to look at my surroundings. As a parallel, we won’t forget how it was to live in the US during this pandemic. We’ll remember the way the world looked on in horror as we stayed in silos of individualism, lacking common consideration for one another. While the present pains from Lyme may fade, I will not return to an able-bodied state of “recovery.” I am healing each day that I find ways to use the heightened sensitivity I’ve developed for others in physical discomfort. I am healing every time that I engage with public places differently rather than trying to “pass” as a healthy 20-something. I am healing each time that I look into my determined eyes in a mirror and redefine what healthy looks like.
Because, let’s face it, it sucks ass to be sick. Big ass. Just the other day, I turned up the intensity on a medical device I’m using to stop getting panic attacks (amongst other symptoms). I could feel that it was working, and I got a little overly-eager, turning it up to a level that wreaked havoc. No one wants to feel horrible, collapse on the couch, ask a loved one to read the owner’s manual for what it says about getting rid of nausea only to hear “nausea could continue for hours or days” without any further promises. I repeat, ass.
I grew up in a society that has shaped me to value stamina, employment and purity, so it’s especially vital that I stay vigilant about the ways I could be getting in my own way with judgement or ableism. What I couldn’t understand as a previously healthy young woman after a short year or so when I wrote Not If, When was that healing is not an event. It’s an ongoing process. Writing this book was the start of a process of re-authoring the illness, and that process has continued. While the sensations that I feel are often “remembrances” or echoes of nerve damage from the previously active infection, they continue to make me aware and sensitive towards the very real and living challenges for anyone who is differently abled than our societal norms.
If this is some of the context that I myself am bringing, just imagine the complexity of a workplace environment! What I will say is that there is not a correct answer about the pace your healing journey will take. Even the presumption that you would need to “keep up” could be additional, unneeded stress for your nervous system, which is already working overtime. I can only speak for myself, but for the years that I have been chronically ill, it has been most advantageous to re-define many things for myself—one of those being the metrics I use for “success” in my work.
I have tried my very best to exit the current of comparison with my peers. There have been periods where I was too sick to work. There were months where I was volunteering, and my work ethic was underappreciated because I was sick. There have been months where I have tried to hide from difficult internal work by over-working in day jobs. You might experience these seasons, too. Or other ones. It’s hard to know how any of our stories intersect. But I will say this: You are no less professional for needing time to find your way. Full steam ahead around-the-clock might be off the table because of a health constellation with persistent illness, but other than that, there are so many ways that your relationship to work could unfold.
What I wish for the rest of our co-workers is that they would value the perspective that we bring. That they would say, “I’m here” when they hear us falling apart. And at the risk of sounding like the most snowflakey snowflake in the kingdom of snowflakes, that we could begin to shift away from economies of growth towards ecologies of care.
There are some skills in particular that will serve you well. If you have a chronic illness, you are probably already more self-aware (out of necessity) than most. It could be important to learn to have resilience and self-regulation so that even in moments of extreme discomfort, you can remain present to yourself. Because the idea of “sick days” gets extra complicated when you’re sick day after day. You may also benefit from an extra scoop of humor on your morning ice cream boat. For science! It lowers cortisol to laugh—something you probably already know. You might be sitting there, thinking “Did this chick just tell me to laugh in the face of this thing that’s so incredibly hard it makes me want to punch a cartoon through the sky cannonball style?!” Why yes, yes I did. Sarcasm is a gift to earthlings. Physical comedy is more effective than an antibiotic. I can’t do a universal infomercial for the efficacy of most things, but laughter… laughter I can vouch for.
When it comes down to it, I don’t have an answer for you about how to magically strike a balance between illness and work. There’s no one-size-fits-all “solution” if the illness gets reframed as something other than a “problem.” It might take time, and it might involve what some people call failures. I’ll leave you with a wacky metaphor because they’re my favorite. Working with chronic illness is like bowling. With a certain approach and perspective, you could be rolling gutter balls every frame. Put those metaphorical bumpers up, and you’re bopping along your way with style. Regardless, you’re rolling somewhere.