In her book, ‘Living a Feminist Life,’ Sara Ahmed says ‘[a] feminist movement is built from many moments of beginning again’ (p 6). I argue that endometriosis is a condition that, because of its often-cyclical nature, also forces many moments of beginning again. Reflection is a recognised way of understanding one’s self in a structured and progressive way, both for mental health support and as a research tool for artistic practice led research.
Through sharing my reflections of aspects of my endometriosis journey, which encompass aspects of my personal life and decisions, my professional life (‘does anyone have a hot water bottle please?’), my artistic outputs (‘Bleeding Hell!’ By Joyce Branagh – the script remains unpublished and unperformed) and academic output (‘Talking Bodies ii’), this piece explores how life and experiences interact with decisions and subsequent limitations endometriosis has forced me to make and forced me to accept. The implications, outcomes and outputs of these sometimes-imposed responses, can be surprising, I did not predict that I would end up writing about arts funding for plays by and about women.
At a time when women’s voices in the academy and in theatre remain underrepresented, it is essential to take space where it is offered, especially when the personal, professional, artistic and academic collide.
As stated above, endometriosis forces many moments of beginning again. There is a predictability about some pain, not in each individual bout of pain, but an expectation that pain, whatever its personality, will return again and again. There is not only a repetitious aspect to the pain endometriosis brings with it, there is also the blurring of the public and the private, the intimate even. My lived experience of the condition has been something of an ongoing, enforced and largely unwelcome dialogue.
At only 13, I had to endure the social excruciation of walking into the upper school and, in front of at least 30 year-10 students, I had to announce to all assembled, that I had ‘started my period’ and needed a ‘pad’. I was 13, I had to talk to the head of year (the only teacher who had they key to the ‘feminine hygiene supplies’). That teacher was in the middle of teaching a lesson when my first period had the temerity to make its first appearance. The Teacher asked why I needed them, I said that it was personal, the teacher told me to tell her what it was and I was given no opportunity to do so in private. At that time I don’t think the privacy or biological needs of female students was given any consideration at all, aside from a free ‘pad’, just the one mind. It was the rather rude introduction to life as a woman, which has led me here again to speak about the most intimate, publicly.
At 15, I remember distinctly my mild-mannered Mother rendered enraged and speechless by the gynae consultant who asked her ‘have you tried paracetamol?’ in response to her clear and robust explanation of the excruciating agony I endured every 21 days or so; at 15. The contraceptive pill just swaps one set of issues for another, in my experience. The contraceptive pill was the only treatment offered to girls of my age who had problem periods. There isn’t just one pill, there isn’t just one side effect, it does not work in the same way for all people, it took me over 20 years to finally find one that actually worked for my body, in the way I needed it to….and yes, we had ‘tried paracetamol’.
Agony and vomiting and days off through school, through college…vast quantities of pain killers, little support through exams, especially when this condition also intersects with dyslexia, hay fever. Summer exams were particularly cruel which was why I was fortunate at that time to have GCSE and A-Level courses that were up to 50% coursework based. Sadly, the days of coursework for GCSE and A-Level are long gone and I have huge sympathy for those who are struggling with endometriosis related pain while trying to pass summer exams that will count for all of their grade. That does not seem to be fair, equitable or a good way for students to show what they are capable of, it surely deeply disadvantages girls unfairly.
Explaining to teachers, friends, relatives, college lectures, boyfriends why extreme pain, back ache, vomiting with pain repeat for me, every 21 days the rock-hard slow stab would build until I passed out on the bathroom floor, hot water bottle scalded exhaustion and days lost.
Pain on repeat.
How to hold down a job? How to explain when the pain begins at any time of day or night leaving you unable to stand up straight, or even feel your legs properly? What professional face does that pain wear? The clenched-teeth, sweat-soaked desperation to collapse into a cab to avoid the bus journey home. Holding on to try and finish one last lesson…to say I have a politically more acceptable ‘migraine’ because no one quite believes ‘period pain’ as a professional enough reason to be absent from work…not really.
I present again and again and again for years at A&E to be told that it is just ‘bad period pain’, to the point that I no longer bother. A brother is taken to A&E with abdominal pain and has, ultimately, totally unnecessary surgery within a day of him presenting…don’t tell me they take the pain of women seriously.
Another professional context: Allies are important. To Dan, who in the middle of a rehearsal room in 2005 realized that I was suffering and what with constructed something like a hot water bottle to give me some relief when I was an assistant director on a major production at a regional theatre. Thank you, I have never forgotten it. You saved some semblance of my professionalism and I just about made it to the end of the rehearsal.
Effervescent pain killers worked more quickly, they were better. Unfortunately, I took so many NSAIDs I became dangerously allergic to them.
The honeymoon marred by pain, which instigated yet another trip to the GP, because ‘when you said you had pain I didn’t realize PAIN’.
2009, and I first heard the word endometriosis. Go home, look it up and tick off every single symptom on the website. It is likely you won’t be able to have children newly married and you might not be able to have children. How fortunate to have a husband who loved me no matter what. C-section 2010, and I am finally diagnosed with Endometriosis and the scar tissue excised. While I hold my tiny new-born daughter. 17 years from first symptoms to diagnosis.
How can I be useful? I am a theatre maker not a Dr, well I am a Dr now, but not the ‘useful kind’. I try and make a play, ‘Bleeding Hell’. An amazing writer comes on board. We get funding to write the first couple of scenes. Can we develop it further? No, application after application is rejected. Repeat and repeat, the messy stories of women are not really wanted on our stages. I write about this, I write about this, I present a paper on this, I get a book chapter published on this. Air my dirty laundry in various settings; because, otherwise no one hears and no one cares. But the pain is mine, the pain is real and the pain repeats. My pain has had countless points of ‘beginning again’.
Movements spring out of people overcoming their own desire to keep the private close, they open up and out so that others may see and share. This is never easy or without risk. Just like this is not easy, or without risk. But it transcends me, endometriosis collides with the way we treat women and their agency to experience and articulate their pain. How they are able to and ‘allowed’ to manage their pain in public and in private. How they managed to have personal, professional life?
Endometriosis is a feminist issue. The lack of funding to support and develop the female voice within the art and the academy are feminist issues. The lack of funding to research and find better treatments and pain relief for endometriosis is a feminist issue, and the fact that women are obliged to open up their personal experience to make professional progress or offer explanation, is a feminist issue. We must find ways of ‘beginning again’ because so much about the discourse and experience of living with endometriosis is failing. I am an artist, I am an academic, I am a woman and I do all of those things while living with endometriosis.
Amy Bonsall is an artist, writer and academic at the University of Manchester.