Imagine a disease that caused men to lose an average of 11 hours of productivity per week due to pain. A disease that caused over 50% of male infertility. A disease that cost over $119 billion each year in lost wages, lost productivity, and medical costs. How quickly do you think we’d have a cure for it? I’d venture to say pretty quickly.
Well, such a disease exists but it doesn’t affect men. Endometriosis is a disease affecting 1 in 10 women, trans men, and people with uteruses. It is the leading cause of infertility among women (50% of infertility cases). And, yes, it costs over $119 billion each year in lost wages, lost productivity, and medical costs. Not to mention, it’s debilitatingly painful.
The thing about endo is that even though it affects 1 in 10 women in the US, it is HARDLY spoken about. There’s minimal research on it, few specialists in it, and no cure. While I have access to great health insurance, brilliant specialists, and the financial means to deal with it, I am hyper-aware of the fact that there are millions of people out there suffering with no access to doctors who can help. And, since birth control is currently the primary treatment of endo, millions of women rely on Planned Parenthood to access the most basic standard of care for a disease that impacts every moment of their day.
It’s my belief that a societal problem like this should be a focus of our nation’s leaders, ranging from medical to political. When I was in the process of being diagnosed with this disease, I saw firsthand how minimal the awareness of this disease was. I couldn’t talk to my friends about my doctor appointments because they didn’t understand the problem. Half of the doctors that I saw wrote off my pain as simply a “women’s problem.” I realized that something needed to be done, so I took a chance, wrote a letter, and saw real change happen.
I spent the summer after my senior year in college living with my parents in Massachusetts before moving to New York for my job. I spent almost every day in bed because of my endometriosis, and I was gearing up for my first, but unfortunately not last, surgery.
At this point during the Summer of 2017, healthcare in America was a big political argument. Along with this discussion arose the topic of Planned Parenthood, which was, and still is, facing potential defunding. Knowing what I know about the importance of birth control and healthcare, I decided I’d submit my thoughts for consideration, knowing that I’d likely get an automatic “thank you for sharing” return message, as I had in the past.
Elizabeth Warren was my senator in Massachusetts where my family lives, and she was fighting the pro-Planned Parenthood fight that I believed in. So, from my bed, with my heating pads on (yes, plural... endo SUCKS), I typed up my thoughts.
I mentioned the importance of considering the actual implications of stripping Americans of healthcare, defunding planned parenthood, and giving employers the power to deny healthcare. I explained how 1 in 10 women live with a debilitating disease that can’t be cured, only treated via birth control or surgery. I wrote about how there are very few doctors specializing in this disease, and the ones who do specialize in it are expensive, and often out of network. I reiterated how the government’s decisions affect the ability for 1 in 10 women to get out of bed and go to work most days.
A few weeks later, I got a note back -- not just an automated note, either. A representative from Senator Warren’s office asked me if Elizabeth could use my letter as ammo on the Senate Floor during the hearing that would discuss access to Healthcare. I mean, WOW. And, obviously...YES!
A few weeks later, I watched on C-Span as Senator Elizabeth Warren read my letter on the floor of the senate to fight for Americans’ right to access the care that they need. It was one of the most surreal moments of my life (see video here).
But, that’s not all. Fast forward a year, and the organization Endo What? posted a video of the one and only Elizabeth Warren discussing the importance of raising awareness of a disease that impacts the lives of so many.
A week later, due to the efforts of Senator Elizabeth Warren (partnered with Senator Orrin Hatch, making it a bipartisan initiative) and Endo What?, it was announced that endometriosis would get federal funding from the Department of Defense for the FIRST TIME EVER.
I don’t want to take credit for the incredible work of the senators and the organization, but I would like to think I played a small part in planting the seed in Senator Warren’s head a year ago. Who knows? Maybe if I hadn’t written that letter, she never would have heard of endometriosis. I’m glad we’ll never know the alternative.
In the current administration, there’s a serious epidemic of people not listening. Not listening to women, not listening to large demonstrations, not listening to facts or reason...the list goes on. But that doesn’t mean we should stop yelling. While it’s easy to be cynical in this society right now, instances like this help me to remember that change can happen, but only if we take chances and share our thoughts. Who knows, maybe the federal funding that’s being given to endometriosis will help find the cure. And maybe, just maybe, I will have played a small part in us getting there. Maybe one day I will be able to tell my daughter that her cured endometriosis was a result of me speaking up.