by EFHou
Photo: Shannon Cohn, Director of Below the Belt
We had an opportunity to conduct a Q&A with Shannon Cohn, the creator and director of Below the Belt. Her first film, Endo What?, inspired the formation of the Endometriosis Foundation of Houston (EFHou). Four of the six original founders met at a screening of Endo What? in 2017. Coming full circle, we are co-hosting a screening of Below the Belt in partnership with Baylor College of medicine on Saturday, March 4th. We hope her work will inspire you as much as it inspired us.
1. We credit a screening of Endo What? as the birth of the idea for our Foundation. Did you ever expect your first endometriosis film to have such an impact?
It's not that I thought it would have any type of measurable impact. I just knew that the information was needed out in the world, that patients needed it, and that was just the first step. Making the film was an act of faith that it would find its place in the world, that the message had a lot of validity and value for the people who needed it and when they needed it.
2. Your Ted Talk at the University of Mississippi has over 224K views on YouTube. In it, you state that endometriosis is "the most common devastating disease that you've probably never heard of." Five years later, do you still believe that's the case?
I think it's still more the case than a lot of us would believe. A lot of us in the endometriosis community kind of live in a bubble sometimes. Of course we all know about endometriosis–almost every single facet of it, sometimes it seems. At the same time, I talk to people who aren't affiliated or aren't familiar with endometriosis in the mainstream, and I have to explain what endometriosis is all over again. Even if you know what endometriosis is, most people don't realize all of the other aspects that go along with the disease. Not just the physical pathology, but all of the social pathologies that create this perfect, awful storm of so many things that people have to go through to get a diagnosis.
3. How is Below the Belt different from Endo What?
Endo What? is meant to be an educational film on endometriosis. It’s meant to give an accurate base of knowledge about the disease. It's everything I wish I had known when I first started having symptoms. Below the Belt is quite different in that it's meant to be a social action film and a film for the mainstream. The hope is that people who have never even heard of endometriosis can watch it, start hearing about the subjects, and then by extension start caring about the issues and how unjust they are. Beyond that, Below the Belt and Endo What? are both meant to be tools for awareness and education.
4. Do you feel that endometriosis care and awareness has changed since Endo What? What type of impact do you hope to see from Below the Belt?
I do believe many factors have increased to make endometriosis more of a common name. More people have heard about it due to a number of different things, from marketing programs to celebrities talking about it, etc.. But a lot of times that information is biased or maybe even inaccurate. So again, we have to carefully navigate our way forward. I do hope with Below the Belt that people get an accurate base of knowledge further about the disease and that they understand that there is a human cost to endometriosis.
5. What is one thing you wish every doctor knew about endometriosis?
I wish that every doctor knew that they're not just treating endometriosis; they're actually treating a person who has endometriosis. When a person tells them the symptoms they're having, the doctor believes them unequivocally and says, “Okay, you are having these symptoms and these are serious. Let's be partners and find answers.”
6. What reaction are you hoping to get from health professionals after watching Below the Belt?
I hope that health professionals can use it as a tool, first of all, to share about endometriosis with other people and help spread the word. Second, for frontline health providers, I hope that they watch the film, become educated about the true symptomatic profile of the disease, and recognize symptoms earlier.
7. People around me still do not understand endometriosis and how it is more than just a bad period. Do you feel like your films are a good way to get partners, parents and other loved ones to understand why our life has to change in order to survive this disease?
I do feel like both of the films are really great bridges of understanding between people who have endometriosis firsthand and the people around them. I've been told more than once that these films have saved relationships just because they go beyond the words that people speak and share: the commonality that so many people with endometriosis have, the experiences we go through and the suffering, the hopes and all of the different things that people with endometriosis experience in the journey to, first, getting a diagnosis and then finding effective treatment.
Photo: Executive Producer Hillary Clinton, Director Shannon Cohn
8. If endometriosis does not have a cure, how do you feel when you hear someone say, "Endometriosis? Oh I had that," implying that a hysterectomy or change in diet cured them?
With endometriosis and saying, “Oh, I had that,” I think we just have to navigate carefully. Obviously we know endometriosis is a highly individual disease, so one person's experience is quite different from another person's experience. When someone says something like, “Oh, my diet cured me,” I ask more questions and say, “Okay, tell me about what you did.” A lot of times they actually did more than that. Or if they are just completely set in stone, that's what happened, I kind of just leave it there and say, “I'm glad you're feeling better.” At the end of the day, that's what's important. If I feel like they're really spreading misinformation, then that's when a conversation needs to be had.
9.What has your battle with endometriosis been like on a personal level? What has been your biggest obstacle? What do you think is the biggest obstacle Endo Warriors face in 2023?
It's been the same as so many countless others. I went 13 years before I was diagnosed. I tried tons of medications, had countless procedures, and multiple surgeries. I suffered miscarriages. I chased misinformation that I thought was from reputable sources. All of the things that we all do. And I think those are still the biggest obstacles that we all face now in 2023.
10. What can we do as a community to demand proper education and treatment for endometriosis? Can you tell us about the Endometriosis toolkit?
I think that we have to work together. We have to collaborate and really focus on what makes us all similar rather than what makes us different. Because at the end of the day, our goals are the same. Earlier diagnosis, better treatments, better care and being believed. So let's work together to the end of those goals.
The Endometriosis Toolkit is meant for frontline health care providers to better and more quickly recognize endometriosis symptoms [beginning in childhood]. Children can actually present with endometriosis symptoms even before they have their first period. It includes links to the film Endo What? as well as a discussion guide, a sample lesson plan, and fact sheets for caregivers, health care providers, and adolescents, as well as other educational materials that all frontline providers need. It also includes posters in English and Spanish. Nurses who review the materials can get 3.5 CE units for continuing education.
This interview has been edited for context and clarity.
To purchase tickets to our screening of Below the Belt on Saturday March 4 at 1 pm, please click here: https://belowthebelt.eventbrite.com/