Sunday, 19 November 2017

Time for Unrest

There's an illness that affects somewhere between 15 and 30 million people all over the world.
Some can lead almost normal lives, or at least visibly normal lives. 
But 75% of sufferers are unable to work, or go to school.
And 25% of those are who are homebound are bedridden.

But no one really knows anything about it. We don't know what causes it, and we don't know why it affects some people so much more severely than others. We don't know why some people get better, and why some people don't. We don't know if it's genetic, if you're born with it, if you develop it, or if you can ever get rid of it. We don't know why 85% of sufferers are women. We don't even really know how to diagnose people with it. All we really know is that it is a "neuroimmune condition characterised by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion)" and that it follows and infection. 

Jennifer Brea has created an incredible documentary about the illness that robbed me of almost two years of my life, and many more years of many other people's. The documentary tells Jennifer's story, as well as those of men and women, of different ages, in different countries, with different severities of M.E., and who are being treated in fundamentally different ways. It shows the many ugly faces of the illness, of suffering, and of relative invisibility - people who have effectively lost their lives, hidden from medical research, the outside, and wondering if they'll ever live again. You cannot tell everyone's story in an hour and a half, and it would have been easy to turn the documentary into a narrative of suffering, repetition and isolation. I thought the power of Unrest was in its ability to shine a light on the things that no one knows about and no one speaks about.

My experience of living with M.E. was that, on some days, you feel like you're alive again. You have more energy than any other day that week, and you feel foggy. Naturally, you want to make the most of it because you don't know when you'll next feel like this. So what do you do if you know that by leaving the house, walking around town, popping into the shops, having coffee and cake in a cafe will mean that tomorrow you're exhausted. And the next day, and the next day. How do you balance trying to live when you can with the consequences of doing so? And how do you manage the constant complex of working out whether things are 'worth it' and figuring out the trade-off? Jennifer's husband, Omar, puts it pretty perfectly - how can you stop doing the things that make you feel alive? Especially when you don't know whether this is just for now, or whether it's forever. 

The second thing is how it affects those around you. I was lucky that I could shower (even if I had to sit down), and I could get myself a drink from the kitchen - and whilst I sometimes needed help getting up the stairs, and when I woke up in the night feeling like I couldn't breathe, I retained some sort of independence. Unrest shows the sufferers who can't walk, who can't sit up, who can't feed themselves, who can't eat at all except through a tube, who can't stand the light, who can't bear sound. And it shows the husbands, the wives, the parents and the siblings who live with M.E. as part of their life too. One of my greatest fears about coming out of remission is who will look after me, because I don't want to have to make that anyone's responsibility...or their life. 

And I think fear is what sums it all up.
Will my M.E. come back? And when will it? If it does, will it go away again or have been too lucky up until now? Will it happen to anyone around me? And if it does, what can I do about it? Will we ever understand what causes it? And will there ever be a cure? Will some long-term sufferers continue to turn to suicide as the only way to escape? Will millions continue to be missing? 


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