Waiting rooms

Sentinel by Steph Masterson

In the last post I said I would write something about the documentary film Unrest (2017) so…

Unrest was made by Jennifer Brea about the illness ME (also sometimes known as CFS). One of my closest friends has had ME for over 16 years so I was very interested to see this film (it is available now in various ways – showing at some cinemas but also available on most streaming services). There have been various programmes and features about ME on TV and radio over the years but this one is different for several reasons – it was directed by someone with the illness, it is a feature film (and a quality piece of work) and it really does seem to be making some waves about its subject. I found it really compelling (and emotional) and would totally recommend it as a fascinating, moving, very stirring piece of art and life. It tackles many of the myths about ME (as every piece about ME seems to have to do) but it does a lot of its work by just showing the everyday lives and challenges of Brea and a selection of other people who suffer from ME (and the suffering comes over loud and clear in this film). In fact one of the reasons many people don’t like the use of CFS, or Chronic Fatigue Syndrome, as a name for the illness is its implication that fatigue is the main problem for people with ME, when sufferers will tell you it is pain (relentless, extreme pain), amongst other things, that is a much bigger issue. The film does have medical content (experts and so on – not that there are many ME experts – and the film looks at that issue too) but what it has, almost most of all, is enough anger and determination to present its evidence in a way that makes it hard for viewers to look away. Unrest is part (a big part) of a growing campaign to get more research into ME, to try to finally offer people with the illness some hopes for cure and recovery (you might have heard recovery stories already but there are many more people who are not recovering and who are getting virtually no solutions from medical sources). It is hard for many people with ME (and their carers and friends and family) to be involved in campaigning because of the nature of the illness but Unrest is a big step on their behalf. A related campaign is MillionsMissing (part of ME Action, one of several ME-related groups) – the ‘millions’ referring to the number of people who have the illness (worldwide cases can only be estimated at this stage but all the ones I found online started with figures like 17 million and, within that, 4 times as many women as men).

ME is one of those subjects that a lot of people think they know something about but in reality very few do (both in the medical world and elsewhere). You may have a heard a scrap of a story about someone who was off work for a couple of months and ‘people said they had ME’ and ‘they didn’t seem ill to me’ but it’s most likely that these bits of stories are not about ME at all (and a lot of them are very old bits of stories and, often, told with malice for reasons I won't get into here...). This film, by concentrating on individuals who are far more typical of ME cases, draws attention to the pain and the suffering and the long-term problems that ME can and does cause. Thinking about it I kept coming back to the idea of waiting rooms. I think that lots of us feel like we spend too much time in waiting rooms (literally and figuratively). Sometimes it can feel like we are always waiting around for things to happen, either waiting to see a doctor of some kind (if that's what we need) or waiting for something or someone to fix things in other parts of our lives (and sometimes that person is us). We are dissatisfied so often and everything seems to take so long (and sometimes we are right to be dissatisfied, but other times much less so). But for people with ME (and those who love them), especially those who have had it for a very long time, they are both in a waiting room (this being a room in their home usually, for years and years in some cases) and yet, at the same time, they aren’t in a waiting room at all (because there just isn’t one – there is no doctor to see them in many cases, no cure, no hopes offered). These people are told, aloud and by actions (and inaction), that they are not important and that is a hard situation to deal with, whenever or however it occurs (and especially when you are in pretty constant pain). In some instances (see the Unrest section on Denmark) people with ME are even punished.

Other thoughts I had recently (partly to do with this film, partly to do with other things) were about strength and weakness. Around International Women’s Day last week I saw so many posts about ‘strong’ women and, whilst I understand the sentiment and the desire to stand up in the face of oppression, the repetition of this word ‘strong’ unsettled me a little (more and more every time I saw it...). I feel that if women (and I include here anyone who wants to use that word) become too fixated on the strong we are all too likely to repeat mistakes that have already been made by men (many, many men...). It would be so easy to end up taking ourselves down the cul-de-sac that some men find themselves in today, a place where ‘strength’ and ‘power’ are cages that don’t let anything else in or out (‘don’t show weakness’, ‘don’t admit defeat’). Unrest is something else entirely and I feel that by making this film Brea has shown both extreme strength and extreme weakness and that is another reason I found it so effective and impressive and whole. We can all be strong, yes, but we can be so much more besides.

Find Unrest here.