Prospects of living with and without endometriosis

Last month, one single doctor’s appointment had three very significant firsts. Two of these firsts, I knew were coming. I spent the days before the appointment trying to dissuade myself of its significance, knowing from past experiences that keeping my expectations low is a necessary assurance. It was impossible though, impossible to deny that this was the first time I was seeing an endometriosis specialist and the first time I was seeing a gynaecologist who wasn’t a man. 

The third, surprise first, was that they, the doctor and midwives, made a plan for me. For the first time, the plan isn’t just ‘do x, if it doesn’t work then I can’t help you’. It’s a plan for investigation, treatment and pain management, there’s even a plan for supporting me while I wait for other parts of the plan to be put in motion. Parts of the plan were presented to me unprompted, word for word in the way I had written them on my wishlist before the appointment. It was quite overwhelming and has left me in a confused haze. I’ll write about the plan itself another time maybe but this blog will instead address how I am mediating my peace with chronic pain with a new prospect for relief. 

During my masters, the first chapter of Alison Kafer’s Feminist, Queer, Crip (2013) was on the reading list for a class on body politics. The chapter, and eventually book, left a profound mark on me and I find myself unable to resist going back to it time and time again. Kafer describes the temporal qualities of queerness and disability, whether or not they overlap and how, or whether they have been the same thing all along. Straight time can be seen as a normative pathway, an expected route through life. Illness is an unavoidable obstacle, usually painted within a curative, diagnostic or prognostic timeline – how long have you been like this? When will you be better? How long until you make a full recovery? How is life different pre- or post-accident or illness? There is a compulsory nostalgia for the lost able mind/body’ (42). In crip and queer time, deviations to the normative pathway are welcomed and celebrated. ‘Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds,’ (27) Kafer writes. 

With chronic, hard-to-diagnose conditions like endometriosis, the spirit of crip time is helpful. It’s helpful because it allows you to stop constantly comparing your present experience with a past before you were unwell or a future when you are cured. It is liberating to accept that your timeline isn’t curative and is instead more crip in nature. With cure-all hope off your radar, energy can be spent on accessibility, accommodation and prosperity. Throughout the pandemic, disabled people and people with chronic pain or fatigue conditions have spoken about how much more accessible work, events and experiences have become thanks to a need for people to work from home en masse. I know I am not the only one that fears that the idea of going back to ‘normal’ (cough curative time cough) also means a return to struggling to fit my body into a normative schedule that never worked for me in the first place. 

My own appreciation for crip time is part of the reason I recently decided to live on my own (that and the important fact I had the resources to do so for the first time). Living with other people, I found, applies a certain pressure to dealing with chronic illness, both in the fact you can’t help but compare the activities of your day with those immediately around you but that there is also a pressure to be less sick to make others more comfortable. Lara Parker writes about her decision to live on her own with endometriosis in Vagina Problems. She writes, ‘it somehow makes me feel worse when someone is there and forced to witness it all. As badly as I crave someone being there with me, telling me I can get through it, it also often feels easier to face it alone… I can’t tell them how to help me or what to do because there is nothing I can do’ (48). For me, living on my own hasn’t exactly been easy (mainly due to problems caused by the pandemic and poor plumbing) but in terms of allowing myself to be really sick, allowing myself to rest, allowing myself to enjoy feeling good when I do feel good – it’s a freedom I didn’t know I was missing.

But, and here comes a big but, endometriosis is part of a family of chronic, incurable conditions that have historically been under-researched, underfunded and out of the spotlight due to the people they affect – in this case, it is women and people assigned female at birth. It is possible that with adequate research, time and funding endometriosis could become a treatable, curable, even preventable, condition. Did I just apply a curative timeline to the condition itself? I think so.

So there I was, a year or so after beginning to accept that endometriosis was going to be an ever-present part of my life and finding ways to be happy and comfortable with that fact, sitting across from my new doctor, a professor working on radical and innovative new methods of diagnosis and treatment of endometriosis, listening to the first treatment plan I’ve ever been offered. Part of the plan involves being in a clinical study – my data, images of my insides, will contribute to finding better ways to diagnose endometriosis. 

I’m not going to bullshit you, I am both thrilled and frustrated by the whole thing. I’m frustrated that it comes to this, frustrated that this all ends in even more surgery, frustrated that I am once again setting my watch to a curative clock, frustrated that despite finding ways to accommodate endometriosis into my life, I am still attracted to the idea of living without it. Thrilled that by following this plan someone else might not have to go through so many pointless, harmful procedures as me, thrilled to have a doctor who, for the first time, knows what she’s talking about, thrilled that I might be able to have a sex life again, that I might be able to run again. 

There are limits to all of this. I am incredibly grateful and excited that this could result in a significant and long-term reduction in pain but I’m not sure I really believe it will happen. That is to say, although the new plan might put me back on a curative timeline, I’m taking it with a pinch of salt. A big one. Doctors have made me promises in the past but I try not to take them to heart anymore, some things just aren’t on the cards for me and that’s OK. In many ways, it’s the safest attitude I’ve ever had, interested and active in the plan, invested in its results but confident that if it fails, I’ll be more than fine. For now, I’m finding an unexpected comfort in the knowledge that while some recent pain days have been so awful that I feel like I would do anything to eradicate endometriosis from the universe, that I wouldn’t be who I am today if it hadn’t manifested in my body. Maybe all this is a way to queer crip time, by occupying crip and curative temporalities simultaneously. 

Like many my thoughts recently have been with India as it faces a brutal wave of COVID-19 and with Palestinians threatened with yet more violence. If you’re an EU citizen, I urge you to sign the European Citizen’s Initiative ‘No Profit on Pandemic’ to urge the EU to make coronavirus vaccines a global public good. Donate to a number of important charities helping on the ground in India via this fundraiser set up by students at one of my alma maters here. For educational resources as well as ways to help Palestinians, I recommend this helpful carrd.

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