Fibromyalgia

I finally watched Unrest and…

If you’re involved with the chronic illness community it’s likely you’ve heard about Unrest, a new film about Jennifer Brea’s personal journey with Chronic Fatigue Syndrome. The documentary, which won a Special Jury Award at Sundance film festival in 2017, follows Jennifer as she learns to cope with CFS/ME and reaches out to fellow sufferers online to try and understand a condition that has baffled medics for so many years. It’s gained a huge following and has led to discussions in parliament about the treatment of chronic fatigue patients within healthcare systems across the world.

It’s now available on Netflix and well worth a watch – but possibly not for the reasons you might imagine.

Fort Worth Business Press
Image via Fort Worth Business Press

If you don’t know anything about invisible chronic illnesses (which I’m guessing isn’t the case, based on the fact you’re reading this blog) then I recommend Unrest. If its purpose is to raise awareness and give a voice to the millions of chronic illness sufferers that are too sore, too tired, too unwell to fight a medical system that doesn’t understand chronic fatigue, then Jennifer has achieved what she set out to do. The film shows the severity of some symptoms of CFS and the families that are affected by the ill health of their loved ones.

But, for me, Unrest touches the tip of the iceberg. It only hints at the story of Karina, a girl in Denmark who is forcibly removed from her parents home because the authorities believe CFS is a psychological disorder; and it only briefly addresses the role of medical sexism and the widely accepted perception that female hysteria plays a key role in the diagnosis of invisble illnesses. This isn’t a criticism of Unrest – I can’t expect one film to address all the problems that surround this complex illness, but there are so many of us talking to people and raising awareness that I feel the unjust treatment of invisble illnesses is where the real story lies.

I haven’t written about the debates surrounding the validity of chronic illness for a while. Well, not since this post last year when I had a stressful appointment with my GP which led to frustrated tears and then a frustrated blog post. Somewhere along my chonic pain journey I have learnt (or tried to learn…) to accept that there are many varying views on this topic. In the case of fibromyalgia: some people don’t believe it exists at all, others believe it’s a psychological disorder, some think it’s the mental and physical shock of past trauma, and others believe it’s an unknown undiagnosed physical disorder that just isn’t identifiable using current technologies. But regardless of what you think might be the issue, one thing I’m sure we can all agree on is: More must be done to research and understand this group of illnesses so that doctors and patients alike know what we’re dealing with.

I was fascinated by the statement in Unrest that Multiple Sclerosis was once known as Hysteria Paralysis, until MRI machines were invented and then we were able to see what was going on in the brain. There’s a strong part of me that feels like patients with ME/CFS and Fibromyalgia are just waiting for the right test to be created, and then we’ll know.

But for the test to be created, the research needs to happen, and there are small studies here and there but in general, the research isn’t happening. Why? Well, I’m not entirely sure. I fear we have reached a point of such acceptance that neither chronic fatigue nor fibromyalgia are being explored as complicated physical health conditions and therefore there isn’t a desire to dig any further, because it’s nothing a little therapy won’t fix. If the research is done and that’s what it shows then, fine, but I firmly believe that we cannot convert physical illnesses in to mental illnesses, just because we can’t see them and just because we don’t understand them. It dismisses our experience, and it doesn’t help the development of work being done for mental health support either.

For every film I see or book I read or podcast I listen to that showcases just how badly these conditions are affecting our quality of life, I wonder how on earth we’re still in a situation where nothing is being done to find what is really going on. The four GPs I’ve seen over the last nine years have sent me home with nothing more than phrases like, “you know your body better than I do, so just do what’s best” and “how you manage this is up to you”. There isn’t even a desire to try and understand, which honestly baffles me.

natural treatments for brain and body
Image via Natural Treatments for Brain and Body

I discussed this with a friend of mine this week – she has CFS and I have fibro, and the two of us are attempting to work full time and balance our enthusiastic, energetic personalities with our exhausted, painful bodies. We talked about the lack of research and I wondered if maybe it’s because the problem isn’t visible. It’s so easy to ignore what you can’t see; if you can’t see our illnesses and we’re too sore to be marching outside parliament then we’re a very easy group to ignore. My friend agreed and added that the bit peopleย doย see is the smiling, working, functioning bit. Our crashes happen behind closed doors and we save all our energy to come and be functioning members of society, so it’s not just that you don’t see the illness, it’s that what you do see looks pretty damn healthy.

So how do we make it real? Well, we keep on trying to explain that just because we don’t look sick doesn’t mean we’re healthy, and just because we don’t talk about it all the time doesn’t mean we’re not constantly thinking about it. We do what we can. We make films, we write blog posts, we particpate in campaigns from the comfort of our sofas and we do our best to keep the conversation going.

And in the mean time, we wait…

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12 comments on “I finally watched Unrest and…

  1. Rosalind Pearl

    Yes! This is why I’m trying to be more visible from time to time on social media, like participating in the upcoming Invisible Illness Awareness Week campaign. We are SO easy to ignore, especially as CFS/fibro isn’t life-threatening. But oh my days, it’s QUALITY of life threatening. I’m sobbing all the time at the moment from the amount of pain this fibro flare has me in. Didn’t know that about MS though! Come on, medicine, please catch up…

  2. Theres another film available on amazon prime called What About ME? Which, from what my mum has been telling me, focuses a lot more on the medical mistreatment side. I say my mum tells me because as someone who has had ME for almost ten years now I much prefer to not watch the things. I know they just make me upset so I avoid them. Haven’t watched unrest either but have seen what people have been saying about it. And you’re right, one documentary isn’t enough to show everything.

    • Oh I haven’t heard of this one – I’ll definitely check it out. I’m impressed with your self-control! I tend to watch, cry, and feel no better off for having watched it! ๐Ÿ™‚

  3. Reblogged this on happyiihgirl and commented:
    Great post-Iโ€™ll be watching this soon!

  4. I donโ€™t have ME, but I just watched this and it still really resonated with me. Itโ€™s so frustrating how little research is done for illnesses like ME, fibromyalgia and illnesses that primarily affect women. I have endometriosis and I got the same medical advice from a doctor that my grandmother got in 1959 when she was diagnosed, which was to get pregnant (which I did not). Itโ€™s so encouraging to see more people come out with their own stories of chronic illness. It makes me feel less alone.

    • Oh wow! That is mad! I totally agree – the lack of research and the unbelievable lack of knowledge from GPs is just so frustrating. You’re definitely not a lone. x

  5. Yes! That’s my new definition of a good Dr- I feel like they care even though I’m still completely on my own figuring stuff out. Thank you for writing during flare, so much appreciated.

  6. Brooke Lewis

    When I was first hospitalized for what turned out to be CFS, the ER staff did their best to send me home, certain that it was only a panic attack due to the fact that my 50th birthday was in 3 months. 6 years later I finally re-entered life.

  7. So true. Ps am I the CFS friend??

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