Megan Densmore, 31, wraps her fingers around the handle of a cast iron ball, squats, then thrusts her hips forward, using the momentum to send the ball soaring up and back down into another swing, all in just a few seconds.
For more than a year, Densmore is working up a sweat hoisting ominous-looking strength training equipment that look like cannonballs with handles. She has been training her body to do 80 such repetitions in 10 minutes to qualify for the 2015 U.S.A. Nationals Kettlebell Competition in August.
One look at her, and no one could guess that Densmore suffered from a debilitating disorder for 14 years. She never spoke about fibromyalgia, a disorder characterized by widespread muscle pain and fatigue, for the first nine years until she decided to take it head-on.
Now that she is symptom-free and pain-free for more than four years, Densmore said she is filming a documentary, titled “Invisible,” to shine light on the emotional and interpersonal challenges of young people living with fibromyalgia.
“Invisible,” scheduled to start shooting on May 9, is directed by Tony Awards winner Nick Demos, whose mother was also diagnosed with fibromyalgia, and produced and written by Pallavi Sastry.
The film seeks to open up the conversation about illness and pain—topics that many in society often shy away from because they are uncomfortable—and show what the day-to-day life experiences are for those facing these conditions.
“‘Invisible’ is for those who are silently dealing with the illness,” Densmore, who is now a fitness coach and actress, said. “I want to provide community and connections for them. This film is for the caregivers, who love them and care for them. I want to create resources and connections for the caregivers.”
“And this film is for those who say #butyoudontlooksick,” she added.
During the film’s five-minute teaser, which released at a fundraising event in New York City last month, Densmore shared the story of fighting the disease.
“At first, I didn’t want to accept the diagnosis for a lot of reasons, one of them being I looked fine,” she said in the teaser.
Before diagnosis, Densmore said she was the picture of health and strength as a competitive gymnast and sprinter. Even a major accident at a very young age did not deter her from running track. However, subsequent accidents and a neck injury pulled her to a point where she knew something was wrong.
“I started to experience symptoms when I was running track, she said. “As a sprinter, I was always able to put in an extra kick at the end, but all of a sudden I couldn’t put the gas on. I ended up in a rheumatologist’s office. Doctors performed a pressure point test. My blood test came negative for all other autoimmune conditions, so doctors concluded that I had fibromyalgia,” Densmore, who was 13 at the time of the diagnosis, said.
She was told that she would never lead a normal life, that she would spend her life taking pain medications just to get through the day. But Densmore said she was not ready to give in.
“You are telling me I can’t be an athlete, a dancer, I can’t pursue any acting career,” Densmore said. “You are basically telling me all the things I love to do, that made me me are going to be impossible because of something that is wrong with me that you can’t really prove on a blood test.”
“I took this diagnosis and figured out a way to make it work for me, figured out the lifestyle that I wanted to have in the face of it,” she went on to say.
Through the release of the film, Densmore said she is looking to challenge the way society and Western medicine view chronic pain and invisible illness by featuring patient’s stories.
According to Keertana Sastry, associate producer, media manager and casting director of the film, said her and her team hope the documentary will be part of a long-term project that will include a mini-series focusing on people living with other chronic illnesses.
“We’re starting out with a short film on people living with fibromyalgia, their stories of being diagnosed (or lack thereof) and how the illness has affected their daily and long-term lives,” Sastry said.
Sastry said the first shoot will take place at the inaugural Annual Caterpillar Walk, a fundraising campaign designed to raise awareness and support for fibromyalgia and chronic pain. Entire proceeds raised will support education, advocacy and research efforts.
The production team is currently auditioning those whose lives have been affected by fibromyalgia to share their stories in the film. If you wish to share your story, please email firstname.lastname@example.org.
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