Unrest, Storytelling, and Understanding

Today’s guest post comes from Jessica Preece, an Associate Professor of Political Science at BYU.

I had the chance to watch the wonderful film Unrest the other day, which documents life with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  At least 1 million Americans experience ME/CFS, many of whom are undiagnosed.  It is a spectrum disorder and leaves about 75% of those affected unable to work.  A significant portion of are bedridden.  It is more common than Multiple Sclerosis, but much less well-known, in part because homebound sufferers are often invisible to society. Research on it is deeply underfunded.

The director, Jennifer Brea, has ME/CFS and directed Unrest from bed.  It won a documentary special jury award at Sundance and is on the shortlist for an Academy Award for Best Documentary Feature.  I first heard about the film because Ms. Brea’s husband, Omar Wasow, is a Princeton political scientist whose research I admire.  They were engaged to be married when she first became ill.  Their relationship plays a significant role in the film.

Ms. Brea is a wonderful storyteller.  She first began filming her experiences before she was diagnosed as a way to document what was happening to her because she was frustrated with those who dismissed her symptoms as simply related to stress.  She also features the first-person stories of other ME/CFS patients who she found online as she was learning more about the disease.  And, the film includes lots of information about the history of ME/CFS, the challenges it presents to medical research and treatment, and the campaign for greater awareness she has been a part of.

All of the information is great, but the most important reason you should watch this film is to see how helpful it is for people to have a platform to tell their stories.  To the extent that people have heard of it, chronic fatigue is often the butt of a joke.  I tried to understand and be helpful to a friend who experienced ME/CFS.  But…I saw ME/CFS (and therefore, my friend’s experiences) through a glass, darkly.  It is just so hard to really appreciate what someone else is going through.  Well-told stories help to clean that looking glass just a little bit.  They help us be better friends.

We have so many problematic stereotypes about disability.  Those who have disabilities are often prevented from publically telling their stories for a variety of reasons.  Their voices are often crowded out by others who claim to tell their stories for them.  Watching Unrest reminded me just how powerful it is for people to be able to tell their own story.

We should all interact with compassion and charity as a matter of course.  We should give each other the benefit of the doubt.  We should withhold judgement.  We know this, and yet it’s really hard to do.  Unrest reminded me why we do it—people’s lives are hard and complicated and everyone is trying to do their best and they don’t need us to doubt or second-guess them.  In other words, this film made me want to be a better person.

Unrest will be airing on PBS at 10pm on January 8th.  It’s also available through iTunes, Amazon, etc.

Comments

  1. Jessica! I’m delighted to have your voice in this space.

    The film sounds great; I’ll check it out!

  2. Thanks Jason! I hope you find it as enlightening as I did.

  3. I don’t usually comment, but as a sufferer of ME/CFS, I was literally moved to tears to see a post about it on BCC, a blog I read every day. Thank you for acknowledging the reality of our illness, and for using this platform to bring attention to it, it means a great deal to me. Bless you.

  4. Artemis, I’m so glad it was meaningful to you. I found the film so arresting. Really opened my eyes to suffering that I was acquainted with and sympathetic to but still had (and have) so much to learn about. The varieties of challenges that people face are so vast, and every time I learn more about them, it just makes me more and more convinced that we need to gentle with people and do a better job listening. Bless you as you navigate ME/CFS!

  5. Something that struck me as I watched this film is that because we don’t know much about the disease, it’s not seen as “real” as other diseases where have concrete causes and treatments, so it doesn’t get diagnosed very often, and then it’s not seen as an important research priority, so we don’t know much about the disease. That vicious cycle must be maddening for patients and advocates. Also, the sexism (3/4 of sufferers are women) that has allowed doctors and society to dismiss it as “hysteria” is…GRRRRRR.

  6. Sister Chris says:

    Wow. Not the post I expected when I stopped over here. But I am so grateful! Thank you Jessica and thank you BCC for posting it.

    My twentysomething daughter received this diagnosis the April before she graduated from HS. She has been intermittently housebound since then, forgoing her four year, all fees paid university scholarship to be a full time sick person. I gave up my life to be her full time caregiver. She hasn’t been to church in 3 years. She has lost most of her friends who have moved on without her. She was disbelieved (and disparaged) by family members until the Mayo Clinic validated some of her co-morbid diagnoses and “legitimatized” her status as an ill person. We don’t talk about the MECFS part because it is so misunderstood and sufferers are horribly stigmatized as psychosomatic headcases and malingerers. Or overachievers with nervous breakdowns who can’t cope. We caregivers discuss this in whispered hushes and parent support groups and occasionally we “come out” to people we trust—who might believe us. It has nearly broken me.

    My faith has been stretched and squashed. I have raged at God. I have left sacrament meetings , midway through, when one more faith promoting miracle cures cancer or heals a brain tumor story threatens to destroy what kernel of belief I cling to as I can’t wrap my brain around why my child isn’t healed. I have “fired” clueless visiting teachers and tormented a few RS presidents who have gamely put up with my bad attitude. I have loathed rhetoric that somehow suggests that my faith, my lack, my weakness might somehow prevent God from blessing her. A God who denies my child because i am not enough can’t be my God. Yet this is a thought that occurs to people like me when our prayers aren’t answered month after month, year after year, when the heavens seem silent and you are wading through quicksand in perpetuity. When Elder Bednar gave that talk about the stuck truck and told us to be grateful for our burdens? I LOST MY MIND. Men are that they might have joy? BS. Be glad your truck is full of rocks.

    When my daughter’s neurologist gently informed her that her best treatment options may cause premature ovarian failure, meaning her dream of children may die before she even has her first kiss— What do you say? A life turned upside down by a disease few understand, few believe in, few want to fund—both my daughter and I have wished for cancer because it is at least quantifiable and an immediate ticket to community support and validation. (And I have seen Family members suffer and DIE from horrible forms of cancer). Yet we are more blessed than most because I am well educated with a mind for science and a gift for logistics, my husband’s insurance through his employer is excellent, and we are upper middle class and white. Our privilege gives my daughter hope and options. Her miracle has been an extraordinary group of medical scientists who believe her, have accepted her case and actively investigate treatment options. For POC, the poor, those lacking education—the discrimination is a nightmare. It is no wonder that our allies in this fight are feminists and AIDS activists. So fellow BCC readers, watch this film and learn about those who may sit in the pew with you—or maybe are too sick to be seen in the chapel—who could use not just your prayers, but your belief in *them*.

  7. There are a number of diseases like this that affect more women than men, but it’s the invisibleness that’s the real difficulty. How many people in our wards who can’t get to Church often to we dismiss from our thoughts for callings? How many do we assume are “not so faithful” simply because we don’t see them at church so often?

    Aside from the callings and service we have that require a lot of time and energy, we need to find things for those who are less physically able but yearn to be of use to others.

  8. Jesse Gramm says:

    I am a 64 year old female, I was diagnosed of Multiple Sclerosis (MS) in 2008 (MRI), my symptoms started out with severe fatigue, poor balance, numbness, double vision, heat intolerance and anxiety. I was unable to go back to work, I tried Betaseron for about 6 years. Tried every shot available, all made me sick.

    In November 2015, I started on Multiple Sclerosis (MS) Herbal formula from NewLife Clinic, the treatment worked incredibly for my MS condition. I used the NewLife MS Herbal formula for a total time period of 4 months, it totally reversed my Multiple Sclerosis. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS.

    Visit NewLife Clinic web-site ww w. newlifeherbalclinic. com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. My attitude is extremely positive.

  9. Sister Chris, thank you so much for letting us hear your story. My heart goes out to your daughter and you and your whole family. I helped to care for a friend/roommate with an undiagnosed illness with ME/CFS-like symptoms for a couple of years, and so much of what you describe is very familiar. You just want to know what is going on. You need a name for it. You need an explanation. “X has cancer” at least gives people a way to process what is happening and some scripts (however limited) to work with. Without that, it’s really hard to not go bonkers–and forget other people being able to be helpful. I think that’s why Brea’s work is so essential.

    And I also wish that we did a much better job recognizing the work of caregivers in our community. In addition to the labor, the emotional burden is huge. And we just expect people (women) to do it without complaint and without support. Love provides motivation, but IT’S NOT ENOUGH. We need to let there be room for people to be angry and overwhelmed and “over it” without stigma.

    So much work for us to do….

  10. Margaret Larino says:

    I was diagnosed with multiple sclerosis at age 50. I was still mobile but use a cane. I had balance issues and some falling. I only took baclofen as the injectable medicine did not seem to help. I was about to try other oral medicines.There has been little if any progress in finding a cure or reliable treatment. My multiple sclerosis got significantly worse and unbearable because of my cognitive thinking.. Last year, i started on a natural multiple sclerosis Herbal therapy from Mbeki Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of Cognitive thinking or memory Loss,, my multiple sclerosis condition is totally reversed. Visit Mbeki Herbal Clinic website ww w. mbekiherbalclinic. com. This treatment is a miracle!!