My wife has endometriosis. I have watched it slowly rob her: at first it just took away her assumption that she would feel fine most days like everyone else. Then it started to take away various activities she loved, such as running, hiking and biking. Then it stole her career. And finally, and most cruelly, it took away many moments, hours and days that could have been spent with her kids and me, and instead dictated that she spend them curled up in bed trying to endure one terrible type of pain or another. I know that endometriosis has robbed many other women of these things as well.
And endometriosis has robbed me as well, though not nearly so cruelly. It has taken away many of the activities that my wife and I used to do together. It has robbed me of time with her. And at times, it has managed to drive a wedge of one sort or another between us, which we then have to dig up and patch over.
But this is not the end of the story, and endo has not won all of the battles. My wife has fought back. Ferociously! And she has given endo a fight to remember. She has researched her disease exhaustively. She has figured out that she actually has about 5 different diseases, some related to endo, some not. She explored treatment plans for each one of them. She has endured several surgeries, just like many other women with endo. She changed her diet. She has tried natural remedies, some of which have helped; she’s uncovered a unique physical therapy modality that has helped her. She uses yoga to help stay healthy, fit and mindful.
But most importantly, she has clung stubbornly to hope. She has fought tooth and nail, and refused to surrender. When she has been through a really tough time, and she coudn’t see a light at the end of the tunnel, she has endured, until a light appears. She has extracted every ounce of joy and love from her life that she could manage. And she has fought this terrible, courageous battle not just for herself, but also for her kids and me.
So here is what I’ve learned. It is possible to fight endo, and it is possible to win. Maybe not every battle, or all the time. But it is possible to win. There are people who want to help. There are medical tools and resources, as well as emotional tools and resources. There are some wonderful doctors who have dedicated their careers to fighting alongside women with endometriosis. And there are people like me: family, friends, partners, children, all of whom admire your courage, rage at the injustice visited upon you, and are ready and willing to fight alongside you.
I was asked to talk about endo from the perspective of a partner of a woman with endo. I think most of us who fall in the category of “support people” feel what I do: shocked. Shocked at the ferocity and cruelty of this terrible disease; shocked at the lack of support and resources from the healthcare system. But most of all, shocked by the incredible courage and resilience of the women we love. We are in awe of you. You are an inspiration to us. We are occasionally terrified that you might give up. And yet you battle on, sometimes with us and sometimes in terrible isolation. We beg you never to stop fighting.