If you’ve seen Endo What? then you know its goal is to provide an accurate base of knowledge so that every girl, every woman on the planet can use it to know the basic facts surrounding endometriosis. To level the playing field, so to speak.

What you may not know is that it’s a first step in a larger social movement to change the narrative of the disease.

During my work both as a filmmaker & lawyer, I’ve spent quite a bit of time studying social movements, particularly around women’s rights & health issues. Let’s dig in and see how we can learn from those who have come before us.

Of particular interest is the HIV movement that started in San Francisco in the 80’s. It took time, but people affected by HIV got mad enough, rallied together and created a movement that demanded change and got results.

Scene from the Oscar-nominated How to Survive A Plague, a film about the AIDS activism movement. Click the image to view the trailer.

In a relatively small amount of time, that movement changed research protocols & how drugs are approved, how patients engage in all areas of the federal government, and even within the private sector. Today, there are resources for HIV research, treatment options, prevention efforts, federal care programs, and international efforts to ensure prevention and care are global priorities.

HIV and endometriosis are different diseases (there is one common theme – patients were/are usually ahead of health care providers in knowledge). We can use parts of the same model on our own quest for change.

Change is possible.

But in order to create it, the voices of advocates must be heard through the noise. Individuals and organizations must be ready to question the status quo and experienced enough to present solid alternatives. We must have strong allies in government who pave the path and stay the course. We must hold media accountable & put together clear strategies with specific goals to accomplish.

Before we as a patient population can do any of this, we must tackle one major hurdle. A vital step in all of this (and an integral component of the HIV movement) is that patients themselves must become experts on their disease. We must know this disease inside & out, up & down, back & forth.

It’s been ridiculously difficult to gain an accurate, whole picture of this disease until now. For far too long, real progress in endometriosis has been held back due to taboos, misinformation, ego, politics & lack of collaboration. It’s time to change that. And that process starts with us – the women and girls with this disease.

After we started filming EW, we realized quickly that in order to bring about real change, we need to approach the systemic problem both internally & externallyEndo What? is meant to approach the problem internally by empowering women & informing health care providers.

To approach the systemic problem externally, we’re hard at work on a second film called Fighting in the Dark. This film is meant for the mainstream and its goal is to create widespread awareness. It follows the lives of 5 women living with the disease and approaches endometriosis from a social justice & human rights perspective.

Two films, two purposes, one goal. Real & lasting change for all of us.

Yes, we know some naysayers will protest the power of film to be a catalyst for change. To them we say this: we live in a world where media is king. It shapes our lives in all ways, big & small. If you don’t believe in the power of film, check out Blackfish, Bully, The End of the Line, Super Size Me and A Girl in the River just to name a few.

That said, no film is an island & we’re honored to be working with the most amazing, kickass women’s health advocates and organizations on the planet to make it happen. And you. Yes, you have a role to play. Become educated. Speak up – whether it be on your local news or media or simply telling a friend about endometriosis or politely correcting a misinformed doctor. Stand up beside us & fight with us.

…………

Okay, deep exhale now. Time to take it down a notch. This post has been full of big-picture thinking and goals – all important as we move forward. However, if you remember nothing else from reading this post, REMEMBER THIS: You are in the driver’s seat of your health. You are top dog, CEO, the head honcho. No one can take better care of the smart, resilient, capable, and STRONG human who is you better than you.

You don’t have to live your life in pain and suffering. Your life is too precious.

And what’s really awesome is this. You’re not alone. I’m not alone. We’re on this journey together & together we can make it happen. 

Much love & respect,

Shannon

P.S. In the coming weeks & months, we’ll be sharing lots more info with you – invaluable insights and eye-opening interviews from the leaders in endometriosis education, advocacy and care. Stay tuned because it’s coming your way soon.