I talk about my uterus a lot. Some of my friends joke about it, saying things like “is there anything you don’t share?” or “I think I know more about your uterus than I do about my own!” While these aren't my favorite comments, I know that those who love and support me mean them with good intentions.
I know that some people think I over-share. I understand that everyone I know doesn’t need to hear about the inner workings of my body. But frankly, I don’t care. An incredible boss of mine told me, “if you were a man, nobody would call it over-sharing.” I believe that wholeheartedly. I think everyone needs to just grow up. A uterus is nothing more than a body part. Just like a lung, and a kidney, and a brain, and an elbow. A uterus brought everyone into this world, and isn’t something we should feel weird talking about. And that’s why I talk about it.
There are a few reasons why I share so much about my experience with endometriosis. First of all, it’s ridiculous to me that things like periods and uteruses are considered taboo. Many women, trans men, and other people with uteruses get periods every month, just like many people get headaches every month. Periods suck but they’re important, and they’re the reason why every single person in this world is alive.
Secondly, dealing with chronic pain is a lonely thing, and sharing our experiences with the people that we love can help us feel less alone. A friend of mine who is dealing with a different type of chronic pain once said that “frequently talking about how [our illnesses] affect us can be essential to our overall well being.” When you're dealing with something painful or traumatic you secretly wish you had someone to share it with, even though you would never wish your experience on anyone else. You wish someone understood. So, by talking about what I’m going through, I feel like I’m not in it alone.
But the biggest reason why I talk about my pain so much is because I need people to know and understand this disease, and I’ve found that people only begin to care about a disease when it affects someone they know. One in 10 women/trans men/people with uteruses of reproductive age has endometriosis -- that’s almost 200 million people worldwide. It is the leading cause of female infertility, largely because it takes so long to diagnose. Why? Because most women are not believed about their pain. It causes people to skip class, miss work, and turn down social invitations. It makes many women feel like they’re crazy because their periods are unbearable and their doctors refuse to listen. It affects them at a deep psychological level. I would venture to say that there’s nobody in this world who doesn’t know someone who has endo, whether that person knows they have it or not.
I have had people ask me if endometriosis is an STD. Some people can’t even pronounce it. Even if someone has heard of it, the response is typically something very cavalier like 'that's that period thing, right?' It kills me when this debilitating disease which takes so much of my life away from me is passed of as just a “period thing,” or worse: totally ignored. I know I’m not the only endo sufferer who feels this way. So, I’ve made it my mission to educate as many people as I can about the reality of this disease -- and the way I do that is by telling the truth about what I go through.
To be clear, I don’t want to be “that sick friend.” I don’t want to be a dark cloud that people look at and think, “illness.” I don’t want to be pitied. But I believe it’s vital for everyone to have a face that they can put to the name “endometriosis.” Think about it: before someone you knew was diagnosed with cancer, did you ever think much about the disease? Or was it an upsetting, but ultimately abstract, concept to you? In my experience,, on the rare occasion that someone has heard of endometriosis, it’s usually just an abstract concept to them.
In the recent Kavanaugh hearings, I heard many people saying things like, “imagine if Dr. Christine Blasey Ford was your sister, daughter, or friend!” While I don’t think we should have to put a personal connection to sexual assault in order to agree that it’s bad, I think that right now we’re in a place where certain issues need to be humanized in order to be paid attention to. Especially those issues that primarily affect women. So I’m happy to be the personification of endometriosis for the people I know if that means that they’ll pay attention to it, look it up, tell their friends about it, and simply care.
Endometriosis is real. It’s debilitating. It’s painful. It’s upsetting. It controls almost every part of my life. And I’m very honest about that. It’s hard to have something negatively affect you twenty four hours a day, seven days a week, and not talk about it. You know when you have a bad cold and you wish your mom was there to comfort you? Having a chronic illness is like that, times 100, every single day. It’s especially hard when the people around you don’t understand it, or, worse yet, don’t care about it.
When I talk about it, I make people aware of this disease that could be affecting their loved ones. I’ve had several friends (and friends of friends) reach out to me and ultimately be diagnosed because they saw their symptoms in my story. I’ve been told by friends of mine that they looked up the disease and told friends of theirs about it. I’ve had people tell me that they had never heard of it before I started talking about it. And this is why I do what I do.
Many people live with abnormal and excruciating pain for YEARS, simply because they’ve never heard of endometriosis. It’s important to understand the symptoms and implications of it before you begin talking to doctors about it, because often they’ll dismiss you if you don’t introduce the issue “properly.” The diagnosis process is long and hellish, and, ultimately, requires surgical intervention to confirm. It’s not easy. It’s scary. It’s full of ups and downs. But by sharing my experience with this disease, I can hopefully spare a few other people from some of the difficulties I’ve gone through.
By discussing my endometriosis, I can create my own ripple effect of people talking about the disease. I can raise awareness and make people take it seriously. This is the first step towards making it a globally known disease, making it a focus within the medical community, and helping the next generation of women suffer less than we did. It starts with me.