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Why I'm Asking the Endometriosis Community to Listen to Lena Dunham

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The next 700 words will explain why I think we need to listen to Lena Dunham, even if we don’t want to.

Lena Dunham is a polarizing figure. Love her or hate her, the choice is yours. Those of us in the trenches of disease and activism have been watching Lena closely for the past year. Ever since she “came out” in February 2016 about having to cancel the “Girls” press tour to rest and recover due to endometriosis, I have glanced her way (and cringed at times) whenever she posted an Instagram photo or video or article about endo. Many of us representing the face of endo have remained silent or measured our responses when it comes to the story she tells and the treatment claims she makes — for example, that “three months of Lupron does the same thing that a surgery can do” and her claim that a recent surgery in which there was “no endometriosis left” had led to her now being “disease-free.”

So it was with a knowing sigh when I read that she needed surgery for deep, invasive endometriosis that was mostly likely never removed in the first place, due to there being precious few expert surgeons truly able to visualize this disease in all its many presentations. I think it was only a matter of time before we would observe these events and her realization unfolding before us. Many of us have been there. We’ve been promised cures, treatments that will work (this time!), the diet that will fix us, the repeat surgeries (oftentimes into the double digits) performed by a non-expert that will relieve our suffering.

A post shared by Lena Dunham (@lenadunham) on

Too many of us know the pain that can make us question whether or not we even want to continue existing. We have stood upon the ledge, dangling our foot over the abyss, tempted by the sweet promise of a cessation to the pain, if only for a fleeting moment. Those who say this disease does not kill haven’t been keeping track of the precious lives we have lost for whom the alluring temptation to end the pain was very, very final.

So I ask you this — listen to her. Learn from her. She is currently and heart-achingly walking the path of so many of us, but on display for the world to see. Reflect upon her story as a cautionary tale. There’s not enough knowledge at this point to proffer a cure. We do know that excision surgery is the closest we can come to a cure at this point — excising the lesions is the key to our being as pain-free as possible, and signs point to Lena’s eventual understanding of excision as the current best treatment.

For those who have followed her slow-motion discovery of the realization that endo is chronic and lifelong and want to utter the dreaded I-told-you-so, I ask that you look upon Lena with empathy and compassion. None of us came to the knowledge that hysterectomy isn’t a cure, pregnancy isn’t a cure, and hormonal treatments aren’t a cure overnight. We had to be taken by the hand by the women who had walked the path before and lived to tell about it. Ferocious activists like Nancy Petersen. Tireless activists like Mary Lou Ballweg. The endless energy of Deborah Bush and her efforts to reach our girls. Kathleen King swimming against the tide and working to end shame and stigma. Lone Hummelshoj bringing knowledge and research to the world to support all these efforts. The whip-smart disruptors like Heather Guidone. They stood up and talked back, and they demanded better treatment. They shared their knowledge with us. They told their story, and offered a path out of darkness and suffering. They carried us along until we could walk on our own, and encouraged us in turn to offer our strength to the women alongside us who, when the pain gets beyond tolerable, are literally dragging themselves along floors to make it to the bed, the couch, the toilet.

Turn around and offer your shoulders, so that other women might be lifted up out of despair and the blinding pain that incapacitates us. If we refuse to carry each other, we cannot all show up to march. And I think when we are able to march, the synchronized step of 180 million women will result in revolution.

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Originally published: May 22, 2017
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