This is a personal documentation of my experience living with Endometriosis. I wanted to try to put into images what the reality of this disease can look like. For many it's crippling or labor like cramps during their period every month, for others it's near constant pain they have to push through every day. And for some it's a reflection of these photographs; months on end of being homebound, mostly immobile and in debilitating chronic pain.
Weeks and months fade into one another; pain meds blur the reality of existence, enough to sometimes forget that life is carrying on outside of these walls. Trying not to look out of windows or at photographs. Time slips by like a bad dream that you try to forget; briefly waking again into a body you don’t recognize and a life you can’t control, until it all happens again. The desperate hope you try not to feel at every surgery and new treatment; the crushing realization when they don’t work. The flashes of fear that this will be it, that it won’t ever be better than this. The physical pain can make you feel like you’re going mad. I watch myself bent around heat pads on the couch, surrounded in prescriptions. I watch myself in ER beds, clinging on to bed sheets as more morphine and drugs I can’t pronounce are pushed through IV's. The map of the last few years is not built around experiences, work achievements or anniversaries; merely the scars on my stomach and the dark spots of memory I try to push aside. My reflection in the hospital mirror. The pavement I collapsed on on his birthday. The wheelchair by the door.
Endometriosis is a disease where tissue similar to the lining of the uterus grows throughout the body, usually in the pelvis or abdominal cavity. It bleeds and spreads, fusing together or completely damaging the reproductive system, parts of the bowel, bladder or more. It's treated with hormones, pain killers and surgeries - all too often by doctors without adequate training, using treatments and surgical techniques that cause further damage and pain. The 'gold standard' treatment is surgery with an Endometriosis specialist using deep excision technique. This is little known about, hard to come by, expensive and mostly not covered by insurance in the US, or the NHS in the U.K.
Endometriosis is referred to as the 'invisible disease’ - it pulls, twists and scars our internal organs, leaving only our swelling, heat pad burns and possible limited mobility to show for it. Its connection with the monthly cycle and the surrounding stigma often brings about narrow minded and ignorant views of the disease. In some nauseating parallel to historical ‘female hysteria’, women with pain that cannot be seen are all too often overlooked, ignored or disbelieved by healthcare professionals. When I first became extremely ill at age 13, my first referral was to a psychotherapist with a mis-diagnosis of depression. On average women and trans men wait 10 years for a correct diagnosis. It took me 12 years of severe pain, collapsing, bleeding, wheelchairs, ambulances and accusations before receiving mine. My experience isn't unique; thousands of people are mis-diagnosed and mis-treated every year, and it's not good enough.
With this project I want to make this disease visible. This is what it looks like. One in ten women and trans men have this, and we need to be seen.
The first photograph of the series, titled '2014-2017', is currently on show at the National Portrait Gallery in London as part of the Taylor Wessing Portrait Prize exhibition, and is included in The Taylor Wessing Photographic Portrait Prize 17 book
This story was supported by the journalism non-profit the Economic Hardship Reporting Project