Alright – so today we’ve got the honor of introducing you to Shannon Cohn. We think you’ll enjoy our conversation, we’ve shared it below.

Shannon, appreciate you joining us today. We’d love to hear about a project that you’ve worked on that’s meant a lot to you.

How Your Story Can Make You Healthier

On my sixteenth birthday, I lay on the cold blue tile of my bathroom floor, door shut and locked. A visceral pain radiated from a place so deep in my abdomen that I was covered in a cold sweat. I don’t know if I’ve ever felt so alone as I did that day – in the worst pain of my life with the knowledge that I was on my own. No one was coming to help, to rescue me, to make it better.

You see, I had already told my father, my grandmother, my aunt, my pediatrician, my general practitioner about this pain I had every month or two. All had assured me it was normal, part of being a woman, in my head or my personal favorite… maybe I was trying to get attention. I recall thinking – these people are out of their minds. I’m a teenager; I know how to get attention and complaining about pain from my private parts is not how I would do it.

Years passed and the symptoms came and went, seemingly without any rhyme or reason. Sometimes I would go years managing quite well with painkillers, others I would spend days back on the bathroom floor. I finished University and law school during this time. Like many others – I sucked it up and tried to live a fulfilling life despite my symptoms, which had effectively been normalized by those around me.

It wasn’t until I was 29 years old that a specialist put a word to my condition: endometriosis.

Endometriosis is arguably the most common, devastating disease that most people have never heard of. While the clinical definition is when tissue similar to the lining of the uterus grows in other parts of the body, the reality is so much more. It can cause pain, organ dysfunction and infertility. Despite my symptoms, it is not relegated to the pelvis. In fact, it has been found in every organ in the body including the eyes, the lung, the brain. It puts a burden on society of an estimated $119 billion USD annually in lost wages, lost productivity and associated medical costs. It is the cause of up to 50% of infertility in women.

All of this to say – it’s a devastating problem and the fact that it’s still relegated to the shadows is more a reflection of culture and history than it is healthcare. It’s a modern medical manifestation of how we’ve historically mistreated women. A perfect awful storm of so many things – taboos and stigma, gender bias, a historical lack of emphasis on conditions that primarily affect women that have led to a dearth of funding, misinformed doctors and financial and institutional barriers to care. Meanwhile, 200 million people – more than the populations of Mexico, Japan or Russia – suffer. They needlessly lose their careers, they lose relationships, they lose their ability to have children.

It’s maddening and unjust. We need to change it.

Yet, as many who have been working in this space will tell you, it’s hard to disrupt a system from within – especially when the status quo is working fine except for the sick population. It stands to reason that a healthcare system in which the storm has devastated millions of lives is not the system to fix it. It’s deeper than that – it’s certainly more complicated than that.

This is where story comes in. My story, your story, countless others. We communicate through stories and learn from them. Statistics and lists of facts can communicate information, but stories elicit meaning and emotion, which is what motivates people to act. People don’t relate to issues, they relate to other people—in other words, to their stories.

For the past decade, I’ve turned a lens on endometriosis. First, with Endo What? an educational film called “film of the year” by Gabrielle Jackson of THE GUARDIAN and “the first step in a plan for change” by NEWSWEEK”. Now we’ve released a new film, Below the Belt, which is executive produced by Hillary Rodham Clinton, Senator Orrin Hatch, Rosario Dawson and others.

The films are catalyzing tools in multifaceted social impact plans that create meaningful changes in women’s health. This includes dramatically increased research funding, federal policy changes, medical education initiatives and widespread public awareness. The film has screened at over 20 medical schools, countless universities, at the National Institutes of Health (NIH) for its 20k+ employees and premiered to millions of people on PBS.

This is how stories begin to create change – awareness, education, policy. This is how your story can make you, and millions more, healthier.

Shannon, love having you share your insights with us. Before we ask you more questions, maybe you can take a moment to introduce yourself to our readers who might have missed our earlier conversations?

Shannon Cohn is a filmmaker, lawyer and social movement builder who has worked across Africa, Europe, the Middle East & the Americas on topics related to gender equity in health. Her new PBS documentary BELOW THE BELT, executive produced by Hillary Clinton, Senator Orrin Hatch and Rosario Dawson, approaches women’s health, and specifically endometriosis, as a social justice issue.

Shannon’s films are catalyzing tools for multifaceted social impact plans that create meaningful changes in women’s health. This includes dramatically increased research funding, federal policy changes, medical education initiatives and widespread public awareness.

What’s the most rewarding aspect of being a creative in your experience?

Working to change lives through story.

Learning and unlearning are both critical parts of growth – can you share a story of a time when you had to unlearn a lesson?

That there’s more than one way to be a filmmaker – when you take control of your own story and are willing to embrace a certain amount of risk – the universe often works to support you and your work in unexpected ways.

Contact Info:

• Website: www.belowthebelt.film, www.endowhat.com
• Instagram: @endowhat
• Facebook: @endowhat
• Linkedin: https://www.linkedin.com/in/shannon-cohn/
• Twitter: @endowhat
• Youtube: @endowhat

Image Credits

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