I have spent 12 months trying to ignore my body. My body has spent 12 months demonstrating how and why that is an impossible endeavour. This week it has been a year since I last published a blog and a year since I last (intentionally) sought medical intervention for endometriosis – happy birthday to my Mirena coil.
It’s been a big year, for me personally and for the world, and there’s been plenty to write about but for some reason I couldn’t bring myself to share any of it. I find it hard to express what stopped me but a read of Olivia Sudjic’s Exposure might enlighten you if you’re curious. The simplest explanation is that I didn’t want to. There’s also the fact that I have always tried to keep these blogs relatively positive in their outlook, and much of what I’ve been doing over the last year is coming to terms with the chronic element of endometriosis, a task that involves a significant distortion of optimism as you know it. Again, if you’re curious about how I began to think about that in a more positive light, I highly recommend reading Alison Kafer’s theorisation of crip time.
I’m sure as I slowly revive the blog I’ll fill you in on some of the things that have happened but here are the highlights: I graduated from my MSc in Gender and Sexuality, I moved to Brussels, Belgium where I’m still living and working a meaningful job that, refreshingly, doesn’t involve thinking about bodies all day. In many ways these three headlines are all connected to each other and to my attempt at ignoring my body. My MSc was, in the end, incredibly rewarding but it left me with a bit of a hangover. I spent last summer recovering from diagnostic surgery and a traumatic IUD insertion while writing a dissertation on the cultural backlash against hormonal contraception. The dissertation ended up being much more than that – really it was a manifesto for a hormonal feminism. Having been told not to intellectualise my health by an old therapist I did the exact opposite and while I would do the same again, I finally saw what the warning was about: I could no longer think about anything else.
So when I was offered a job in Belgium I grabbed the opportunity and saw it as a chance to find out what else I could think about. In many ways the plan was a success. Especially at the beginning, when I was hopeful that if I gave this new treatment a chance to work then maybe I might be able to forget about having endometriosis for a while. So I just ignored the old pains and the awful new ones that had arrived since I got the IUD. I ignored the fact that I hadn’t stopped bleeding for four months. I passed out from pain out on the metro and tried to ignore that too. I took a lot of painkillers and just kept waiting for the IUD to start working. I ignored the very obvious fact that ever since the coil insertion I had redeveloped vaginismus in a much more frightening way than before. I stopped tracking my bleeding or pain, and put every bad day behind me, trying not to notice how debilitating they were or how frequently they were coming. I would work all day and then return home exhausted to eat then sleep, sometimes taking a few moments to marvel at how my flatmates could work, exercise and have social lives. I tried dating again, and when I quickly realised that doing so would make me think about my body, pain and the fact that nothing had really changed, I promptly stopped.
Then in January 2020 I came down with the chickenpox at 24 years-old. As it took hold, I told myself it was all in my head, that everything I was feeling was imaginary. It was only when the blisters arrived that I began to believe my body and started to see how much impact the diagnostic process had on my mental health. There is nothing like an acute illness to make you dwell on a chronic one. It was horrible. Every medical intervention I’ve had has gradually chipped away any sense of sexiness I once had, and let me tell you, nothing will finish it off like chickenpox taking over your face and vulva. I wrote some very dark essays where I vowed to start listening to my body’s warning signs and then the files corrupted and I lost the motivation they captured along with the essays. I went for a mammoth hike and felt my body in a good way for the first time in months. It felt good to feel good and I tried to chase that feeling.
I finally stopped bleeding for the first time since the coil went in, only for blood to start emerging from new, scarier places. I ignored it. I noticed that I started bleeding after I ran for a bus or carried something heavy. So I stopped doing those things. Seeking good feelings and avoiding the bad ones seemed like a solid way to ignore my body in a slightly healthier way. And then a pandemic started.
I talked myself out of my COVID symptoms, which were later confirmed by a positive antibody test. I used lockdown to redraft the novella I wrote in 2018 and while the process involved thinking about physical pain, it was easier than thinking about what I was going to do with the pain I felt now or that might get worse at any moment. My pain started to come back more frequently, in ways I could no longer ignore. My flatmates repeatedly implored me to call in sick to work. I again reverted to the logic of waiting until there was a ‘real’ reason, ignoring the fact that not resting immediately would probably cause that ‘real’ reason to arrive. When I bled I no longer reached for a menstrual cup. I finally acknowledged that the coil insertion was the last straw for my vagina: it had truly closed for business.
As lockdown began to ease in Belgium I went to see my GP. I had no intention of mentioning endometriosis, I just wanted a blood test and a repeat prescription. But she started to ask questions and I, reluctantly, answered them. ‘You can have surgery for endometriosis, you know?’, she said. I smiled politely and said I knew. After further probing I decided to give her the overview of what I had tried and where I was. She asked me what was next, did I want to seek treatment in Belgium? I didn’t want to seek treatment at all, doing so had only made things different, not better. She tells me I don’t have to suffer, that she knows Belgium’s sole endometriosis specialist personally, that I have options. I start to believe her. I’m not yet sure where that sits with my acceptance of crip time, but optimism is contagious and it was the driving force of this blog. It’s good to have a little back. It’s good to be back.
This summer I am taking part in Endometriosis UK’s #WalkForEndo. I will be doing eight 7.5km walks in solidarity with those still on the path to diagnosis, which takes 7.5 years on average in the UK. You can support my fundraising by sponsoring me here. Research suggests that racial biases in medicine, where endometriosis is often considered a white woman’s disease, lead to even longer delays in treatment and diagnosis for Black women. There is a wealth of literature that logs the wrongful presumption that Black women’s tolerance for pain is higher than others. It takes all of us to address these inequalities in healthcare and beyond and I urge all readers to confront them.
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