SXSW: Unrest

Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS). It’s a debilitating chronic disease as often misunderstood as it is misdiagnosed. People like to call it “the lazy disease” or “the I don’t want to go to work” disease. Doctors often diagnose a mental disorder rather than the autoimmune disease it actually is, telling patients “it’s all in their heads.” But to the 1-2.4 million people who suffer with it in the United States alone, it’s a disease that leaves you drained, sensitive to light and noise and possibly much else, perhaps unable to stand and walk. Permanently housebound and bedridden, they feel they’ve gone missing from their lives – it passes them by while they lie in bed, sometimes with cognitive impairments that make them feel like they’re not truly living.

Director Jennifer Brea is one such person. She was a happy newlywed when suddenly she just got hit with a disease she didn’t even know about. Robbed of the things she once loved doing, this film documents her daily struggles, the constant tug of war that must be waged against her body. She also reaches out to people around the world suffering the same thing, and together they try every supposed miracle cure on the market. When none work exactly as they hope, they stage a protest most are unable to attend. It’s really sad to see such vibrant people struck down by such sweeping disability. It is no wonder that despite serious medical symptoms, one of the most common causes of death for ME sufferers is suicide.

I am moved personally by this film because as you may know, I too have an autoimmune disorder. There are tonnes of autoimmune disorders and all but a handful are practically unknown, even to doctors. I admit to a small bit of jealousy when Brea complains about ME being the least-funded of the major diseases because my disease doesn’t even rate – we call it an “orphan disease”  – nobody’s even trying to cure it. There is no funding. There is no ribbon. There is no textbook. I’ve visited approximately 100 doctors and I’ve had to educate all but 2. The lives this disease ruins are too few for anyone to care. So in that way I understand perfectly what she’s going through; you have a terrible disease and you have no hope of cure. You have no hope, period. And on top of having no hope for yourself, you also have this huge burden of guilt because like her, I’ve dragged someone else into the equation. And while Sean is not sick, his life is also disabled by my disease. If I’m too riddled with pain to leave the house, he stays home with me. He cares with me. He deals with my terrible moods when I’m in pain, and my pushing him away when I’m in despair. He has brought me around the world to different doctors, and he feels the same low when I leave another appointment hopeless. In order to live our lives, I push myself out of bed and out of the house too often, and we both know I’ll pay the price. I’ve cried in anguish in Paris, outside the Centre Pompidou. I’ve bled across the Miami boardwalk. Even right now, in Austin, Texas for the South By SouthWest Conference and Festival, my suitcase is bursting with pills, gauze, and needles (that Sean has had to learn to inject me with) just to get me through, and I’ve limped along in secret pain, unable to even bring one of my most depended-upon medications with me because it’s illegal in this country.

So you’ll understand why I think a film like Unrest is so important. It sheds light in a dark corner of the medical community. It’s important to remember the real people who live their lives in this dark corner. They have voices. They have families who love them. They have friends who miss them. And if we cannot contribute to the cure, we can become allies. We can be witnesses and sympathizers and believers, so that nobody needs to hear from a doctor that “it’s all in your head.”

It’s screening at SXSW March 14 at the Vimeo Theatre and March 16 at Alamo Lamar, which serves great pretzels.

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15 thoughts on “SXSW: Unrest

  1. Carrie Rubin

    I’d like to see this film. Thanks for highlighting it. Autoimmune diseases are cruel buggers for sure. (Sorry…is ‘bugger’ a bad word in Canada? Something from my memory tells me it is.) Plus, more women than men are afflicted, and in a world where medicine is still patriarchal (though it IS better now than it used to be), disorders like chronic fatigue syndrome and fibromyalgia are often written off. I hope someday soon we’ll know the cause of chronic fatigue syndrome, so that it will get the attention it needs and deserves.

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    1. Widdershins

      Canadians don’t have quite the same ‘pucker’ response that Americans seem to. However as an ex-Aussie (been in Canada for 13 years) I still have to choose my audience when I say things like ‘bugger’ or even more challenging, ‘bugger me!’ 😀

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  2. reocochran

    Jay, I will seek this film out! I have hope for some solutions despite no foundations nor cures on the horizon. Take it easy and thank you for sharing since I had missed this in my reading your posts. Hugs xo

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  3. Journals of a Wildflower

    Well written. Thank you for helping to raise awareness for ME/CFS through your documentary review. I’m sorry to hear that you have an autoimmune disease as well. The hopeless feelings that come after countless specialists appointments is nothing short of devastating. I have had countless specialists tell me that they don’t believe in ME/CFS. I truly hope that through raising awareness about all these invisible illnesses and autoimmune diseases, we will finally get the medical profession to act, to research causes and cures. Doctors even thought Multiple Sclerosis was “hysteria” before brain scans were developed, thus discovering a physiological cause, as Jennifer Brea mentioned in her TED talk presentation.

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  4. Sickly Stardust

    This nearly brought me to tears because I can relate so much to how you feel. I have CFS/ME and Celiac disease, and I can’t tell you how many times I’ve left doctor offices feeling ignored and not taken seriously. Autoimmune diseases as a whole are sorely neglected and not understood at all by the medical community. I often feel scared by the amount I *don’t* know about my diseases, because I want to control and help as much as I can. But it is hard to help what you are ignorant about, and that thought drives me crazy.

    On the bright side, I adore your blog and I am so pleased that I’ve found it, because aside from having illness in common, I love movies!

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