Life with endometriosis

Art Photography Project with Margaret Kalms

I’m Margaret Kalms, from Canberra, Australia, from the other side of the world!

Endometriosis affects women world-wide. I spoke in Manchester at the Endometriosis Information Day in April about ‘Life with Endometriosis’ an art photography project I am coordinating.

I have a different perspective on endometriosis. I’m not a medical professional. I don't offer any medical advice or opinion on treatments. I’m an art photographer, an observer. I don’t have endometriosis myself so I don’t have any pre-conceptions about how it should be. My observations are about other people so they cannot be dismissed as me winging or complaining.

I cannot offer physical healing but, telling stories can help sufferers process their experiences and place their experiences in a wider context.

For many years I’ve been exhibiting my woman art photography visualising menstruation. I want to reduce the shame women feel about menstruation. A friend told me how much my photos meant to her and told me about endometriosis. I was shocked about how common it is. One in 10 women have this! That’s as common as breast cancer or diabetes, yet few people know about it.

“Margaret Kalms Presenting”

The more I read about endometriosis, the more upset I became. Why does it take years and years for women to be diagnosed and receive treatment? I was absolutely shocked. This is so completely unacceptable in our modern age… I was brought to tears…

Life with Endometriosis’ raises awareness by making the impact of endometriosis visible. I listen to women with endometriosis and visualise, using photography, what endometriosis means them.

Life with Endometriosis’ is way more than simply portraits. I’m not a personal  paparazzi following women around. Instead, I collaborate with women to express whatever aspects they want. I have previously worked with paid models and they will do most things that I ask, but they cannot know what endometriosis feels like.

Only a woman with endometriosis can really know how it FEELS, so my photos have a depth of expression that paid models are unlikely to achieve.

The purpose of ‘Life with Endometriosis’ long-term is to make endometriosis visible so it cannot be ignored. The photos will be interesting and will engage a wide audience. I’ll create an exhibition and an accompanying art quality book that will reach ordinary people, people interested in art, your friends, your work colleagues and those who would not pick up a medical brochure about endometriosis.

“No-one can see it”

Life with Endometriosis’ had a big impact at the Endometriosis Information Day. The audience had not seen photography like it before. There were even a few tears.

Several women came up to me after my presentation to say how much my photos resonated with them. The presentation included quotes from women with endometriosis with my photographic responses, which created a powerful ’story’ of some of the impacts of endometriosis on women’s lives.

The impacts shown in ‘Life with Endometriosis’ so far included:

  • attitudes of work managers and colleagues to time taken off work,
  • the hidden nature of this disease,
  • difficulty moving,
  • internal organs stuck together,
  • major surgery such as bowel resection,
  • depression and self harm,
  • fighting the disease,
  • the need for carers,
  • infertility,
  • IVF,
  • motherhood,
  • resilience and positive attitude.

Overall this project is giving me an insight to the impacts on the lives of women suffering with endometriosis. The women I have met have immense courage, immense strength and the attitude of taking joy out of the world where ever possible.

One couple were inspired by my talk to participate in a photo session! Endometriosis can have huge effects on couple relationships, practically, physically, emotionally and sexually. This couple chose to visualise how they are fighting endometriosis together.

I love the determination in their eyes!

“Fight Like a Couple!”

I enjoyed meeting the women who attended and had conversations about their experiences, they are so brave. The more I learn about this insidious disease, the more determined I am to raise awareness.

A big ‘Thank You’ to Endometriosis UK for organising a very successful Endometriosis Information Day in Manchester. I’m sure all attendees learnt heaps more about endometriosis from the excellent speakers - I certainly did!

You can follow the journey with me on Facebook. and contact me: lifewithendo@artofwoman.com.au

I’m university educated and I didn’t know about endometriosis - until I started doing my woman photography. I entered my photos in art exhibitions where some women saw my photos and burst into tears. For some women there is a dark side to menstruation including cramps and pain.

The women who participate are expressing real feelings that they experienced. I think about how to translate your story into photos using expressive symbolism. We talk about potential photo ideas. We agree on several to actually attempt, plan a photo shoot, and take the photos.

I’m dedicating my photography skills, my equipment and my time to help raise awareness of endometriosis. I would like ‘Life with Endometriosis’ to be presented to GPs so that they have a clear idea of the impacts of endometriosis on the lives of real women and consider endometriosis during diagnoses.

Many women with endometriosis appreciate every moment, because, perhaps tomorrow they may not be well, or perhaps tomorrow, they’ll be in pain or have to go to hospital.

In so many of the women's stories, there is a sense of taking charge of life, taking responsibility for their own inner being, their own attitude to life.

It was a great privilege to be included with such a line-up of knowledgeable people. I deepened my understanding of endometriosis and its impact on women.

I met and chatted to many women during the breaks. They are such courageous people.