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What I Thought About the Award-Winning Film, “Unrest” (vs My Healthy Movie Night Companions!)

What I Thought About the Award-Winning Film, “Unrest” (vs My Healthy Movie Night Companions!) | www.achronicvoice.com

Poster of award winning film, "Unrest" by Jennifer Brea. | www.achronicvoice.com | #unrestfilm #chronicillness #mecfs #chronicfatiguesyndrome #movierecommendations #documentary #spoonies #awareness

Who is Jennifer Brea, and What is “Unrest” About?

Jennifer Brea was a Ph.D. student at Harvard, when she was struck down by a mysterious illness. This is a documentary of both her and her husband’s journey, living with this nightmare of a disease called ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome).

She approached me last November, and asked if I could review her film, “Unrest”, in exchange for a preview. (I apologise for getting around to it so late.) “Unrest” has now won quite a number of awards, and is currently available on Netflix, iTunes, Vimeo, and Google Play. It is my hope that it reaches the shores of Singapore soon, too!

What is the Meaning of Pain?

“This illness destroyed my life. But what it showed me, I could never give that back.” – Jennifer Brea, “Unrest”

There were many meaningful sentences made in the documentary, but that quote stood out to me the most. Pain has indeed destroyed my body – I can feel the altered parts, and the physical weaknesses are ever present. Yet it has also opened my eyes to a whole new level of living. What it means to be human – so fragile, yet so strong. Broken, but enough. Full of flaws, yet that’s also where our beauty emerges from.

Get the Tissues Ready

I will be honest, I’m one of those women who cry during sad movies. It’s not uncommon for my partner to look at me with amusement and say, “but it’s not even sad!” True. Sometimes it’s not even a tragic moment, but the music! Those epic minor key tunes are powerful! I decided to watch it together with my partner and his father over Christmas, as I wanted to get more opinions about this film (and sneak some awareness in ;)).

Best Documentary in Ages

It was hands down one of the best documentaries I’ve watched in ages, and I was bawling throughout the film. (Okay, more like sniffling in silence, because my partner’s dad was nearby. I didn’t want to alarm him.)

While I don’t have ME/CFS, I do live with plenty of other chronic illnesses to make up for it. Even though the pains that we experience are different, the ultimate impact is the same. It affects our careers, and relationships with everyone around us. It scrambles your identity, and changes you both inside and out. It reduces you into a rubble of a human being, dependent for aid, and sometimes struggling for survival, even.

As such, I could relate to every single thing Jennifer said and did in this movie. While I’m not chained to my bed like she was, I’ve had periods in my life that were similar. For a few years, my joint aches had been so bad that it took me two hours every morning, just to shift my legs over the bed. Everything in the film was so real.

Viewpoints from My Healthier Movie Companions

As I mentioned earlier, my partner and his dad watched this film with me. But guess what? Their viewpoints were quite different from mine, which isn’t surprising. No matter how hard you try, it’s impossible to understand someone else’s pain if you’ve never suffered it before.

I will share some of their thoughts here, because I feel that it’s important to listen to what healthy people think about such affairs as well. We shouldn’t let outrage consume us, or they will never dare to speak truth. We need to work together, in order to improve our circumstances within society.

Three Words that Summed it Up for Them

Three words that summed up what my partner’s dad thought about it: interesting, enlightening, and boring. Yes, boring. I’m not going to argue with him, because I too, agree that chronic illness is boring. It doesn’t have a beginning, middle or end, and as human beings, we’re drawn by nature to that structure, with life as the biggest story of all time.

Neither could he comprehend the intermittent nature of the illness, where it was possible to walk around one day, and then become bed bound the next. That doesn’t make any sense in terms of how a ‘normal illness’ works – you fall sick, you rest, you recover, and continue on your linear path. Chronic illness is more of a dysfunctional sinus wave, a disruption to the pulse of life. If you’ve never had an arrhythmia, you wouldn’t know what it feels like either.

To provide a bit of background, he is one of the kindest, most generous and patient person I know. I’ve seen with my own eyes how he cared for his wife when she was stricken with cancer, and he’s never judged or belittled me for always being sick. If someone of this nature can find chronic illness boring, what about the rest of society?

What’s the Point to Raising Awareness?

“Why doesn’t she do something about it?” That was something that puzzled him, even though I tried to explain that she was doing something about it by making this film, despite the difficulties.

He asked, “what’s the point of raising awareness? Is it to ask for funding?” He believes that the ultimate point is to facilitate the discovery of a cure. This is a very normal way of thinking. Speaking for myself, solving problems and finding solutions were my biggest coping mechanism for decades, until they weren’t. There comes a point in many a chronic illness person’s life where such coping tactics no longer work, and you’re left with the sole task of just trying to stay alive, and get through each day.

Yet this statement does make sense too. Whilst the first step towards any change is to acknowledge that a problem exists, the ultimate aim should be action. Showing empathy to a sick person is often an excellent way to provide support. But to contribute to research and press for solutions on a bigger scale, is also to show solidarity. It is empathy in action.

How Celebrity Endorsements Help

He mentioned that he tended to pay more attention when it was a famous person who was speaking. The only difference I would say, is that you can relate to that person to a certain degree. You know a little about their life, their personality, and perhaps even admire their talents. You feel a connection. This is nothing new, as charities often use a single child or person to ask for funds, instead of showing a generic populace.

He also said that, especially for actors that have been in the business for awhile, you can see the marked differences of ‘before’ and ‘after’. There is a frame of reference, as we follow their timeline in showbiz. This is why many in the spoonie community are ‘happy’ when a celebrity chooses to be open about their chronic illness, such as Selena Gomez with Lupus. It’s a power up in terms of awareness raised, as opposed to the trickle plebeians like me generate 😉

For example, Lady Gaga recently cancelled 10 tours due to extreme fibromyalgia pain. I remember a friend telling me years ago, how much energy there was in her concert, and all the dancing they did. I shuddered thinking about it, as that sounded like a great recipe for a pain flare. Now, knowing that Lady Gaga lives with fibromyalgia, I too wonder how she did it all. Having that grand frame of reference makes you ponder about it more, and being in the news always helps 😉

The Problem with Charity Overload

This is another interesting point about where and whom we should donate to. There are so many charities and people in need of aid, and the media bombards us with ads every day. What do we do? Should we donate to that sick child, or to you? We can’t help everyone in the world.

I really have no answer for that, except to just go with your heart. The only thing I can hope and strive for, is to show just how much chronic illnesses also affect us as human beings. The impact on society may be silent, but it’s huge. None of us are ‘more’ or ‘less’ human, we’re all just trying to live with a decent quality of life.

Technical Terms Whizz by You

While I understood the medical terms used in the film, they confused him at times. Words like ‘mitochondrial’ whizzed by him, and I’m not sure if it’s part of what made the movie boring. When you don’t understand something, it’s easy to zone out, or quickly become lost. While I think that these terms were necessary for explaining certain factors, it was also a good reminder to be more attentive with my own blog posts. Not every term that’s become everyday words to us is common language out there.

Conclusion: Definitely Worth Watching

If you had to pick only one film to watch about chronic illness, I would give my vote to ‘Unrest’. While the viewpoints of my partner’s dad were quite different from my own, I’d like to say that we didn’t argue over them, and I took no offence.

In fact, I found his perspectives fascinating and enlightening. It’s important that we are open to what others think about our illnesses too, if we want change to happen. After all, we also need them as our advocates. They are the people with the energy and means to make a difference in our lives, and for the good of all society, too. As always, clear communication is the lifeblood for cooperation, in a bid to improve circumstances, whatever they may be.

Watch the Official Trailer Here:

    For More Insight:

  1. A Filmmaker’s Personal Look at Chronic Fatigue Syndrome (article on wsj.com): https://goo.gl/r7V4dr
  2. This New Documentary on Chronic Fatigue Syndrome is a Must-See—and Not for the Reason You Think (article on vogue.com): https://goo.gl/PYoxbZ
  3. Chronic disease: an economic perspective (article on who.int): https://goo.gl/XzvyRg

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If you had to pick only one film to watch about chronic illness, I would give my vote to 'Unrest'. It documents the life of Jennifer Brea, a Ph.D. student at Harvard, who gets struck down by a mysterious illness called ME/CFS...Click to read review or pin to save for later. | www.achronicvoice.com | #unrestfilm #documentary #movierecommendations #chronicillness #spoonielife #achronicvoice #chronicfatiguesyndrome #MECFS

15 comments

  • […] Jennifer Brea was first crowd funding for her film “Unrest”, the working title she had was “Canary in the Coal Mine”. I can totally relate to that […]

  • This is an outstanding post, Sheryl, and you’ve definitely made me want to watch the movie for myself. You’re so right that it’s impossible for people to really understand chronic pain/illnesses unless they’ve experienced them. Like you, I have a very supportive partner (my sweet hubby) who is extremely supportive and tries to understand, but sometimes he’ll make a comment that makes me realize that as much as he wants to, he just doesn’t completely get it. Sharing this on Pinterest and Facebook. Blessings to you!

    • Hi Terri,

      Thanks for your comment! Yes we can’t blame them either really. How do you understand a concept that you’ve never personally experienced? I hope you enjoy the documentary if you do decide to watch it! 😀 Have a lovely week!

  • This is a great assessment of Unrest, Sheryl. I thought the documentary was excellent. It summed up how I live day to day with ME/CFS. I cried through the whole thing. I haven’t asked my partner to watch it with me yet because I think he will form some of the ‘outsider’ opinions mentioned above and I’m not sure I am ready to deal with that yet. He sees it every day, but I am hesitant. Maybe in another few months.

    I watched Gaga’s documentary, too. It is not as focused on her illness, but it shows some extreme moments that were very hard to watch.

    Thank you for sharing your thoughts with us. It’s a very powerful film.

    • Thank you Carrie! You want to know something strange? I blog quite a bit but my partner has never read any of the posts, and he doesn’t even ‘like’ my FB page lol. I don’t really mind this because the amount of effort he puts into taking care of me on a daily basis is so much more support than a few miserly ‘likes’ and whatnot. What I’m trying to say, I suppose, is that our partners do care for us, although they may express it in very different ways 🙂

      I watched a bit of Gaga’s documentary but didn’t finish it…I should get round to that! 😉

      • I guess it’s not strange because my partner does the same! He does so much for me at home: All the groceries, most of the cooking, all the heavy lifting. The parts of this documentary where Jen Brea is weeping about how useless she feels and what a burden she is to her husband just ripped my heart to pieces. I feel that way all the time.

        I don’t expect my partner to follow everything, but some things, he just doesn’t know about. He comes to my appointments with me and contributes, but then he’ll say something truly wacko that he hasn’t mentioned to me and that doesn’t have anything to do with what I’m going through. Like once he asked my doctor for Adderall because he read somewhere that it might give me more energy without asking me first. (After that I asked him to run that stuff by me first before he mentions it to my doctor.) I don’t want to get flagged by a comment with someone who is accompanying me on my appointment, even if it is my partner.

        He reads some of the things I send him, but I think he’s busier taking care of what’s right in front of him than worrying about informative articles. Everything that I have said is going to happen has happened so far and I just wonder if he’s prepared for it: It’s going to get worse, not better.

        It has gotten worse, not better. Time has proven that over the years. My journal entries prove it.

        I’m not sure he accepts that yet, even though I’ve already moved into the acceptance phase of this part of my illness.

        Anyways, this is why I hesitate. I don’t like to overload him. I don’t want our lives to be only about me and what I’m going through. If he was spending as much time as I do looking at online research, he wouldn’t have a life either. He’s not sick, so I try to time these things appropriately. Hospital tomorrow so I’m looking at recovery from the extra energy and blood draws for the next week. Maybe we’ll watch it again in a few weeks when he’s ready for it.

        • Heh when I was younger my mum used to follow me for appointments, but we always ended up quarrelling because I’d get frustrated, so I decided to just always go for my appointments alone. It’s less stressful for everyone all round.

          And yes I also told my partner it would only get worse over time, but he’s an optimistic soul! He says, “well, health research would also advance in the future. Who knows, a cure might just be around the corner.” Which also makes sense, doesn’t it?!

          As for feeling like a burden – I felt this way a lot with my ex, and he didn’t do anything to reassure me that I wasn’t. But over the years I’ve learned a lot about self-worth and self-esteem, and think my perspective is less self-destructive these days. It did take a long time, though! xx

  • It was very interesting to hear your views on this (especially the emotiveness of it, as I’m not usually a crier either). I’ve seen a few comments on Unrest, and I think I’m at a point where I’m ready to check it out for myself because curiosity always gets the better of me eventually, for better or worse!
    Caz xx

    • Hi Caz,

      Thanks for dropping by! Definitely, it’s something you would be able to relate to, I’m sure. It’s very powerful, especially when our lives can be so similar in many ways, too. xx

  • I loved it too and I cried! I have chronic fatigue but not to her extent. However everyday it is with me often making me feel as if I’m spinning in to the earth.

  • Really interesting Sheryl. Useful to hear about it from the perspective of a healthy person too. I’ve asked my parents to watch it, but as yet they’ve not got round to it! I probably need to emphasise the importance of it to me, but at the same time I think I’m worried that if they do watch it, they may not give me the reaction I want. Hmm! I cried my eyes out too watching it! xx

    • Hey Emma, thanks for reading my review 😀 Yes it was very interesting to see their responses, I thought it’d be different, too! So I was thinking to myself, if I want to reach out to this group of society, I need to expand my awareness tactics too. But in terms of relation to the film itself, it was definitely very real and raw for me. I hope your parents watch it with you soon! 🙂 xx

    • I think the reaction of others, of those that are ‘well’, would be quite daunting for me too, especially where my parents are concerned because I think, underneath everything, I doubt their thoughts of me and what I’m going through (but it’s hard to appreciate and really ‘know’ the struggle with invisible illnesses unless you’ve experienced them yourself). I hope your folks get to see it soon and that maybe it opens a door for talking more openly about what you’re going through too. xx

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