Craig Maupin, editor of The CFS Report, has suffered from ME/CFS for more than 20 years, and has long been a leading commentator on the issues facing all people with ‘invisible’ illness.
Vermont may be known for its bucolic scenery and small town charm, but a new documentary film, Invisible, by Michael Thurston & Rik Carlson, highlights an often unseen presence in Vermont, the voices and lives affected by chronic fatigue syndrome (CFS).
From 2004 to 2009, filmmaker Michael Thurston interviewed members of the CFS community in Vermont. The result of those interviews is a complete picture of what makes living with chronic fatigue syndrome singular – and devastatingly unique – amongst human experiences.
A diverse array of voices speak to their experience of awakening one day to the harsh realities of life with CFS: families and finances shattered, physical suffering, and a lack of support from community.
A common theme is the sudden onset of the viral symptoms of CFS.
Rik Carlson remembers it as "lightening, a thunderbolt. I got into bed, and I didn't get out of it, for years." Julia Bond remembers that "it felt like the flu… I kept thinking I could get over this, but I never could."
Despite the descriptions, more than one sufferer describes not having previous experiences that enable them to describe the physical experience of CFS.
Through their voices, it becomes clear that the highest price of CFS may not be its physical price.
The support of family, financial safety nets, and access to medical care are guaranteed with some illness, but not with CFS.
Dr. Terry Naumann, who purchased a disability policy before contracting CFS, found that the fine print said it did not cover CFS. Another voice, Tiffany Martin, speaks of not having enough resources for food and shelter.
Invisible is not only about people who suffer from CFS.
Supportive clinicians add their experiences of working within a medical community that seems largely uninterested in CFS. Dr. Ken Friedman and Dr. Carol Joy Gardner share their experiences of working with CFS, a disease for which the federal research agencies and their medical colleagues have failed patients.
Family members are also affected by CFS. Two mothers speak of the effect of CFS on their relationships with their children.
Friendships fall by the wayside as well. Raymonde Perron talks of losing friends who seem unable to understand the severe limitations of the illness.
Dramatic testimony comes from a former physician, Dr. Terry Naumann. Once a healthy and successful physician, Dr. Naumann recalls seeing patients in his former practice who "lost their spouse, their jobs, and everything they want to do" to chronic fatigue syndrome. Dr. Naumann, now disabled, speaks candidly of the difficulty of "being on the other side of the exam table… especially when you aren't believed."
Invisible. is not without hopeful sentiment.
Love for stricken spouses pours through in the testimony of Barbara Carlson and Rex Forehand.
And Rik Carlson [president of the Vermont CFIDS Association – www.vtcfids.org] emanates a warm presence throughout the film, advising those with CFS to find support, work together, and accept their limitations.
Tiffany Martin, who describes what it was like to "never really get to be a kid," focuses on a hope for a future someday without CFS. Pondering a healthy life, a future without CFS, she asks: "What would I do?"
Invisible may be the title of the film, but the voices in this documentary narrative are clear and cohesive. The illness that Rik Carlson aptly describes as having a "ridiculous name" is more than invisible to the national consciousness. Chronic fatigue syndrome brings indescribable suffering. Chronic fatigue syndrome is a stealer of dreams, finances, family, and future.
Rendering the price of the devastating disease visible is what the film Invisible does very well.
ProHealth is proud to make Invisible the Movie (DVD) available through our store. To order or read more about the film click here. This review is reproduced with kind permission of the author.