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.
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.
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 people do 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…