Almost four years ago everything changed. I was in my first year of law school and I was dizzy almost every day; the pain was so constant I wondered if it was even real. And of course, it really all started before that — the bleeding after sex was trying to tell me something, the day I made twelve trips to the bathroom at work, not even keeping ginger ale in my stomach was one of my body’s many cries for help. I plugged along still, ailing, but somehow blissfully unaware that something was wrong. Sometimes I chalk it up to the oblivion of youth, the way in which immaturity makes us feel invincible even when our bodies are screaming at us that we're not. Then there were the all the tests that came back normal, the people who said it was just part of being a girl, the doctors who all said that nothing was wrong.
That was, until one didn’t; until one told me I was probably sick. And then another cut me open and told me I was definitely sick. And another one cut me open again and told me I was sicker than before; and again.
How I coped (or didn't)
My mind started catching up to my body and it was like trains that had already collided, catching fire. The validation of the pain was comforting but terrifying. I couldn’t write off the way I was feeling as anxiety or bad periods anymore; I was sick. Lesions from endometriosis were overtaking my organs, causing them to grow together and stop working the way they should. The pain, the physical decline was so overpowering that I had tunnel vision, and, in the moment, I was indifferent to everything else I was losing. But I wasn’t the same girl anymore; I wasn’t girl who did a full day at the office and went over to a guy’s house to fuck him two or three times only to take the long train ride home and do it all over again. I wasn’t the girl who stood on her feet all day selling suits to flirtatious older business men, squirreling and spending cash on designer bags and lingerie; I wasn’t the girl who got off before her stop on the subway so she could take the long way into Harvard square and get in a little extra exercise.
Endometriosis hollowed me out, leaving a gaping void where so much of who I was once resided. My whole world became doctors’ appointments and hospital visits; waiting rooms with uncomfortable pleather chairs, dark ultrasound rooms with those hospital pillows that are never soft enough. Then there were the emails to my professors, the texts to my friends; I’m still not feeling well, I can’t today.
Still, the years I was my sickest were the years I worked the hardest.
Productivity as catharsis
I wrote articles and took research assistant jobs for minimum wage and said yes to anything I could do from my couch sandwiched between two heating pads. I worked to prove to myself that I was more than a husk filled with disease and defective hormones. I worked because it gave me some semblance of control. And this was cathartic — it made so much of what I’d been through meaningful and survivable. But I also worked to compensate — to prove to the people around me, at work and at school, that I wasn’t broken, that I wasn’t a lost cause or a burden. This was toxic, and it bore unhealthy patterns into my brain and my self image that I’m just now learning to reverse.
It never occurred to me to stop and think about what made me happy. I was operating at a deficit and I had to make up for that. I took the finite amount of energy I was left with after all that time with needles in my arm and speculums in my vagina, and I used it to prove to everyone I still valued my work; that I was still someone you’d want to hire, or a student you could be proud of.
Incorporating pleasure + joy
This is something a lot of folks with chronic pain and chronic illness struggle with; a sense of not being enough, of being weaker and therefore needing to do more to prove our worth or our status in society. But what I’ve realized upon reflection is that the inverse is true. It’s actually a pretty simple equation: the more adversity innate to your existence, the more important and powerful a role pleasure and joy should play in your life. And while this balance is something I’ve far from mastered, here is some of what I’ve learned:
- There are big pleasures in life and little ones, and we all need them both. Big pleasures are things like milestones, achievements, falling in love. I’ve been working toward the big pleasure of graduating law school and I fully anticipate sobbing when I pick up my regalia in a few weeks. Little pleasures are things like rewatching your favorite comfort TV show, buying yourself something small and frivolous just because, eating your favorite takeout. For me, it’s buying fresh flowers from my favorite florist almost every week.
- Remember to factor privilege into this equation; self-care and pleasure mean something different to me as a cis white woman with chronic pain than it is going to look with someone who lives with further marginalization. I’m able to actively invest in more joy, in more time to take care of myself and my body, because I can afford to work less; because I have support systems and doctors and loved ones and friends who are there for me. And the unfortunate truth is that it is often those who most need joy to offset life’s hardships have the least opportunity to indulge. Consider this not only as you take care of yourself, but as you take care of others; when you’re shopping for that post-therapy pick me up, try to buy it from a store that ethically sources its merchandise. Check on your friends who don’t have support systems, or family money, or who live everyday with their hardships compounded by racism, homophobia, misogyny, transphobia, and other forms of bigotry.
- Stop beating yourself up. Seriously, fucking stop it. The impulse to be perfect and to never doing anything indulgent or lewd or wild is an insidious beast when you’re sick; you feel like every choice you make is an equation of self-preservation, of calculating who will look at you and wonder, "if she’s really sick, why is she doing that?" Fuck that. Fuck ALL of that. Go on that vacation and post the pictures on Instagram, take a nude selfie, have a bunch of orgasms, expend all your energy on a day out with your friends and call in sick the next day. You’ve got one go at this life, don’t spend it reserving energy like you’re going to be able to use it when you’re dead.
- Minimize toxicity in your life wherever you can; toxic people, places and things that remind you of shit times, anything that enters your airspace and makes you feel less than. When you’re sick so much shit is out of your control, so make sure the shit that is in your control is Marie Kondo’d. I recently threw out every item of clothing that I wore when I had a catheter; it was like, two dresses that I never changed out of that gave me PTSD flashbacks every time I saw them in my closet and they will not be missed.
- Wear the good jewelry. Take care of the outside of you in a way that makes you look in the mirror and see yourself for more than what you’re dealing with. Don’t squirrel your nice clothes for a day when you might feel better. Wear red lipstick to the pharmacy, and your favorite necklace around the house. Put your favorite lingerie on under your sweatpants and remind yourself in every way possible that you’re fucking hot stuff.
Remember that you're worth creating balance in your life between the struggle and the joy.
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Caroline Reilly is a reproductive justice advocate and a law student based in Boston, MA. You can find her work on Teen Vogue, Bitch Media, Rewire, Scarleteen, Frontline (PBS), and Death & the Maiden, and where she writes about abortion, medical misogyny, death phobia and more. Additionally, her writing on abortion access for minors, which gained national recognition, can be found here. Find her on Twitter at @ms_creilly.
