Overthinking female chronic pain: how I’m playing the socially constructed role of a sensible endometriosis patient.

Endometriosis is a feminist issue — the condition has been ruining women’s lives for centuries, yet it is still under-researched and poorly understood.

“We don’t know for sure how or why it starts, but we understand something about its mechanism. The endometrium is the tissue that lines the womb, which is shed each month if there is no pregnancy. In endometriosis, these special cells are found elsewhere in the body — mainly in the pelvic area, though they can get just about anywhere. Each month, wherever they are, they obey their nature and bleed. The big three symptoms — of which all GPs should be aware — are painful menstruation, painful sex, and infertility”

“oh, you know, female basketball players struggle to give birth anyway, so you better stop doing sports anyhow”.

According to most gynaecologists, the type of tortures that I was going through, were ‘normal’. Over the years, I have also been repeatedly told that the pain is ‘just in my head’ and that I should simply get used to it, and that things will get better, once I get pregnant.

You might wonder — has anyone ever asked her if she had even considered being a mother back then? The answer is simple: no.

Source: BBC Three

It appears that “for hundreds of years, pain in menstruating women has not qualified as a medical mystery worthy of actually solving” (Dusenbery, 2018).

Photo by Erol Ahmed on Unsplash

However, there are also these critical situations, where there is no time to rehearse your patient — doctor appointment. The times when pain is so real that all you want to do is tell them how it really is, scream and demand medical support.

In June 2017, Alison Kimberley was desperate to get relief for her endometriosis pain at a hospital in Australia. However, her calls for help were dismissed across the hospital before she was told to ‘go home and deal with it’. She did not get any meaningful help and was left distressed and in pain. Her story was similar to so many other endo-sisters.

Kimberley was in severe pain and demanded medical support. She broke out of the nice female patient role and turned into a fighter who fought for her life, health and voices of other female patients. She cried, screamed and demanded help. Nevertheless, her pain was still dismissed.

Women with endometriosis have been told they are just overreacting to “normal” menstrual cramps, while still others have “contested” illnesses like chronic fatigue syndrome and fibromyalgia that, dogged by psychosomatic suspicions, have yet to be fully accepted as “real” diseases by the whole of the profession.‘

In her article for the BBC, she writes that:

Image source: BBC

My feminist voice inside of me is screaming. Not only because I can’t often finish my sentence without being interrupted while discussing my pain, but because endometriosis and women’s health issues have been systematically ignored for years.

Last year, I went to see a doctor to discuss my endometriosis symptoms. To cheer me up, the specialist told me something I have heard again and again — ‘don’t worry hun, your endometriosis gets cured once you get pregnant*’.

What was my reaction? I played my female-patient role well. I agreed, left and allowed myself to be emotional later that day.

*Pregnancy doesn’t ‘cure’ endometriosis: more info.

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Alicja Pawluczuk

Alicja Pawluczuk

Dr Alicja Pawluczuk (AKA hy_stera) writes about digital humanities, feminism, and social justice → www.alicjapawluczuk.com + www.hystera.online