To Those Who Respond to Us With, 'Endo What?'

Awareness is something I am very passionate about. It is said that 1 in 10 women have endometriosis, a similar statistic to those with diabetes, but when we mention our condition we are often met with “endo what?” and having to bring up words like “womb lining” and “bowels” to someone can be pretty embarrassing. Yet I continue to be open about my disease, with the hope that one day the general population will be able to reply with a simple “I understand.”

This is why it can be so frustrating when someone knows of your illness yet simply refuses to acknowledge the impact. Knowing someone “has endometriosis” is completely different to understanding how it may affect them.

I went through a difficult period over the last two years when endometriosis came between me and my sporting passion. Anyone with a passion understands the hard work, dedication and sacrifice involved to continue to develop. Anyone with a chronic illness knows how debilitating and unpredictable it can be. Finding someone who understands both is difficult.

I spent several years juggling my passion with my illness. The people I trained with had become a second family, we traveled together and celebrated huge personal achievements. They also supported me through many difficult times on and off the mat. Except when I was sick.

Jokes were often made in regards to my illness, I was criticized for my lack of commitment and my attempts to raise awareness (ironic), when I tried to explain the definition of a “chronic” illness, I was called a “chronic hypochondriac.” It hurt that people so close to me could be so ignorant.

When I became too ill to carry on with my passion, I was devastated. Knowing endometriosis took that away from me contributed to a dark period in my life, and the people I was once so close to became strangers.

Fortunately, I built some very real relationships among those that did not understand. After I had an excision surgery I was feeling better and ready to give the sport another go. These people supported me in my return, even going as far as raising awareness for me by explaining my illness to others, which has only increased the level of support I have received. I no longer fear being too sick to train. Having that level of support is completely overwhelming, and I no longer feel bitter.

I once read that the Buddha has a saying explaining that some people’s eyes are so caked in dust that they cannot see. His teaching is for “those with little dust.” There will always be people who do not understand chronic illness or simply do not care. These people can be exhausting, and I already have limited energy. My efforts are for “those with little dust.”

I am truly grateful for those who do understand, who listen and raise awareness in their own little ways, and maybe one day when we say, “I have endometriosis” we won’t be met with “endo what?” but a simple “I understand.”

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Thinkstock photo by Liderina