Sami Holden provides the first look at a documentary, Invisible: The Film, seeking to bring to light the many faces of invisible illness and chronic pain.
Passion is something we all seek in life. Hopefully at some point, we each have that “a-ha” moment where it all clicks into place. Maybe that moment is when your dad first taught you how to throw a baseball in the backyard. Perhaps that moment arrived the first time you started art class in elementary school and a paint brush was placed within reach. Some forms of passion come from circumstances. It’s a familiar story that individuals who grew up in impoverished areas have then utilized their upbringing as a catalyst towards creating social change. After all, who better to know how to create change than people who have lived it? People who are passionate create this contagious energy that draws you in. My personal passion, for a number of years, has been to bring a face to chronic illness. I started working on projects at the age of 15. Any way I could get involved so that other chronically ill teens would feel less alone, I jumped on board. Over a decade later, I still think of ways to make invisible illness and chronic pain something more normalized. I hate hearing stories of friends who get reprimanded for utilizing a disability parking space because they “look fine”. Life can be a bit weird for us sometimes, always having to prove our degree of impairment.
When I came across a documentary in-the-works entitled Invisible: The Film, I instantly felt more hope. I watched a YouTube video on Megan Densmore, the originator and main focus of the documentary, who lives with Fibromyalgia, which according to Mayo Clinic is “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” In spite of this Megan trains to compete in kettlebell one arm long cycle, and has owned her own health and wellness company for over a decade. The documentary seeks to challenge the way society and western medicine view chronic pain and invisible illness. I was excited that the social stigma of chronic pain and invisible illness, something I have faced since I was an infant was being turned into a topic people weren’t ashamed to discuss. In facing these conditions, we can’t prove the pain we’re in. We can’t explain how one day we can take our dog for a walk, but the next we may be in a wheelchair. It’s hard to explain the need to cancel a date because of a migraine that won’t break. Without a doubt, dealing in silence with these conditions can lead to emotional distress, of which men are less likely to seek support for. I saw this documentary-in-process for what it is – necessary. I recognize a kindred spirit in Megan, and see potential in slowly reducing stigma for the chronic pain and illness population and to create more solidarity for all of us.
Megan and I may not have the same health conditions, but this type of narrative resonates with me. The list of invisible illnesses, including a rare clotting disorder called Antiphospholipid Antibody Syndrome, and the complications I’ve had as a result from all of the illnesses takes up an entire one-page Word document in 11 point font. On a good day I take 51 pills, 4 inhalers, and one injection. On a bad day I’ll take somewhere near 70 pills. Every day. This has not deterred me from working towards life goals, including having been Miss Wisconsin for the ANTSO program. If you met me in person you’d never know the battle my body has been through. Both of my parents have invisible illnesses. My mom has Reflex Sympathetic Dystrophy, a rare nerve disorder that resulted as a complication following rotator cuff surgery. My dad has been diagnosed with Rheumatoid Arthritis, since he was in his early thirties. It was a diagnosis that would’ve been caught earlier had my dad not tried to push through the pain, as men are often conditioned to do. I still remember him limping through the mall as he helped me pick out my back-to-school supplies as a child. Where my dad could be the basketball coach for my sister when she was young, it was a challenge for him to even shoot a few hoops with me. Fortunately, with proper treatment his symptoms are fairly under control.
Nick Demos, who was added on as the director for Invisible: The Film just this week, also knows what it’s like to have a parent experiencing an invisible illness. In his first interview following signing onto the project, he discussed with me why exactly he felt the need to make this documentary a reality. Following radiation treatments for a breast cancer diagnosis, his mother began exhibiting odd symptoms – painful muscles, debilitating migraines, and some days not being able to get out of bed. At times, even putting lotion on her skin would be excruciating. She was eventually diagnosed with Fibromyalgia, and has since worked on finding the balance between Western and alternative medicine to treat her symptoms. As a son, it was challenging to watch his mother be so ill. As an award winning director, TONY Award-winning producer and creativity expert, he knew he could help his mom and others like her by “bringing the state of invisible illness to light.” His hope for the documentary is to get it into the film festival world and have as many people see it as possible. He finds it important to focus in on the human and emotional aspects of illness. It’s not just a clinical picture, but a mind/body one, and patients deal with their diagnosis well beyond the minutes they spend in a doctor’s office. Nick feels those facing invisible illness and chronic pain deserve to have their stories and emotional journeys be told. The documentary could even serve as a future teaching tool for those trying to understand these conditions or for doctors treating their patient population.
Many of my friends and other family members also live their lives with invisible illnesses or chronic pain – Cervical Dystonia, Cluster Headaches, Colitis and Crohn’s Disease, Hashimoto’s, Hemophilia and other bleeding disorders, Fibromyalgia, Lupus, Lyme Disease, Migraines, Mitochondrial Disorders, Multiple Sclerosis, Primary Immune Deficiencies, and Rheumatoid Arthritis just to name a few. It’s estimated that 100 million Americans will deal with some degree of chronic pain. By the year 2020, the number of people living with chronic conditions is expected to rise to 157 million, and many of these conditions are invisible.
It is my belief through supporting the creation of this documentary; the stigma of “looking fine” but still being ill can be reduced. It will show that those with chronic pain and invisible illness accomplish incredible feats in spite of their disorders. Megan is obvious proof of this. It is my hope that through Invisible: The Film, a greater discussion on the topic will be sparked and more stories of those living with invisible illness will be a little more heard. I have no doubt that when passions combine, things that were once invisible can be brought out into the light.