A Unified Community
The connection and support in the tight-knit fibromyalgia community is something Demos has found beautiful to witness throughout the course of making the film. The community, he says, has been very supportive of them, as well.
“I really am so passionate and excited about how the environment and the world around these people who have fibromyalgia is going to change,” Densmore adds.
Those outside of the fibro community, however, still aren’t quite sure what it is they’re making their film about.
“There are still so many misconceptions about what fibromyalgia is, and honestly a lack of education about fibromyalgia,” he explains. “And I am the perfect example of this; here I am with somebody in my own family has fibro, and I didn’t really even understand what it was.”
“My hope is that it will bridge those communities together in a way. If we can shine the light in a large enough way that the outer community can see what the inner community is looking at and dealing with.”
‘There Is Hope’
When asked what his hopes for what people will take away from the film, Demos says, “That there is hope.”
“That we as the community can come together, and the more that we band together, the more visible that we become, that the more likely change can occur for us.”
With more visibility comes more money in the direction of fibromyalgia treatment, he says.
“Particularly from the insurance companies, alternatives — like massage, like nutrition counseling, like a Pilates class, like yoga — those things need to be covered under insurance. For a lot of people and a lot of insurance, alternative treatments … are not covered.”
Densmore and Demos both echoed the importance of people with fibromyalgia being their own advocates and finding what works best for them.
“Whether that’s changing a job or not taking a medication, or taking a medication, or trying a new treatment — empower yourself to discover what it is that feels like the right choice for you in that moment,” Densmore says.
They hope, too, that with more visibility the fibro community will finally be able to stop explaining themselves and convincing others their disease is not in their heads.
“Instead of taking the approach of, ‘I’m going to convince this person that my disease is real,’ it’s purely like, ‘No — I can’t do that today,’ ” Densmere says.
“Stand true to who you know you are, and what you know to be true,” Demos adds.