Having absented myself from the blogosphere for the whole of August, I would like to be able to report that I return refreshed, having read 120 books. This would be an exaggeration, if not an outright lie. I return having read my way through 85% of Susanna Clarke’s Jonathan Strange and Mr. Norrell (800 pages) including most but not all of the footnotes. I am bowled over by Clarke’s achievement in writing Jonathan Strange the story of which concerns a dispute between the two foremost magicians in England over the history and correct practice of magic, incorporating as she does an entire fictional corpus of magical texts. It would be 15 years before Clarke wrote another book – Piranesi – and when you read Strange it is not hard to see why the sheer volume of the task made her ill.
Illness – our perception of it – coping strageties, societal acceptance or dismissal of different diseases in particular chronic fatigue syndrome and myalgic encephalomyelitis (ME) are the subject of Ill Feelings. By Alice Hattrick (Fitzcarraldo Editions). This is my 9th out of 10 books of Summer hosted by Cathy @ 746 Books.
“All the names I know for ME/CFS are derogatory: yuppie flu, mass hysteria, shirker syndrome. Most of what you read in books and articles on ME/CFS flatly condemns the experiences of millions of people.”
Despite a rather unsympathetic title, I found this book completely absorbing. It is partially autobiographical, partially analytical, partially feminist. It’s a history of how to be ill and disbelieved and ignored and have to fight every step of the way not to be looked upon as a malingerer simply because the things you describe do not show up on a scanner. Hands up anyone who’s been there! Hattrick’s mother is a sufferer but so is the author herself. The fact that they both – two women – suffered from similar symptoms, immediately made them prone to diagnoses such as ‘hysteria’.
What is it like to suffer from chronic fatigue syndrome or ME – also known as post-viral fatigue syndrome? What do those things even mean? It is a far from straightforward matter to establish a diagnosis let alone treatment. Sufferers often present with normal blood and other tests and yet are in constant pain, barely able to function. How should it be approached?
If you are a sufferer or know someone who is, or are just interested in the answer to the above question, then join the rest of the medical profession because no-one really seems to have much of a clue about this one. The impossibility of describing or pinning down such a plethora of symptoms into any sort of a coherent medical narrative is made more complex by a conflict between ideas relating to organic illness and psychiatric associations that constant tiredness always seems to invoke.
The current unwelcome trend for the patient being expected to know much about their own condition and treatment is exacerbated in these fatigue type illnesses. This is something I’ve never understood and yet the idea is becoming increasingly entrenched and mixed up with spurious notions of self-help and self-care. Not that those things are not appropriate but there are limits. Certainly Hattrick seems to think so.
“My mother must write her own medical history over and over again, like a Doctor, except she is also the patient.” The impairment of cognitive functioning, difficult in focusing or concentrating, impaired sleep, mood swings, heart palpitations, unrefreshing sleep, anxiety and of course extreme fatigue.”
I am a collector of syndromes which are in themselves collections.
That dreaded word ‘syndrome’! When you get that word in your diagnosis the medic is effectively saying: We are sure it’s real and you are not just imagining this, but it’s not showing up on any of our tests and so we don’t know what’s causing it and don’t know what to do about it. Sorry.
Hattrick points out that in terms of disability and what constitutes such, illness is political. If the state does not recognise something as a disability then you can’t suffer from it. Or you may of course suffer from it as much as you wish, but you will not be classed as disabled and therefore will receive no support. No matter how many forms you fill out. Even more importantly perhaps than this, conditions which are not taken seriously are not allocated funding for research. Lack of research equals ignorance. Our ignorance of post-viral fatigue type illnesses is currently more relevant than ever. As Hattrick says:
” if more investigations had been carried out into the biological actions at play in the causes of ME/CFS… rather than the psychosocial aspects which hadn’t seemed to have gone anywhere and were plagued with vested interests, people with post-Covid might have a better understanding of their condition.”
Much the same could be said for the untreated and unrecognised mental health epidemics that seem to be savaging large parts of the globe. Chronic fatigue syndrome shares many symptoms with anxiety and depression and is often treated accordingly with selective serotonin re-uptake inhibitors (SSRI’s) which effectively alter the chemistry of our brains (or purport to) in order to stabilize mood swings. The author has been through all these treatments and others.
Hattrick operates demolition jobs on certain ideas and research studies surrounding this illness. She devotes a Chapter to research carried out in 2011 in the UK known as the PACE trial which purported to show that graded exercise and CBT were effective treatments for chronic fatigue symptom ‘despite reports by patients organisations that these treatments were ineffective and even harmful.’ Behind all the jargon, the underlying thinking of the PACE trial seems to be that chronic fatigue syndrome is reversible and behavioural – in other words, take more exercise! Is this not the equivalent of telling someone they need to get out more, or get a life? No doubt sufferers would be the first to admit that they need to get out more but would really like some help from the medical profession with that objective, help which appears not to be forthcoming in any useful or meaningful way. The author writes:
“What I know is: you will be told at some point in your life – if you haven’t already, which is likely especially if you present as female – that the ill feelings in your body cannot be entirely explained.. They will look for all the things they know the shape of, and find nothing. You might be told: you are stressed, or you are anxious, or you need to go to a support group even though they know there aren’t any, or aqua aerobics on Wednesdays.”
In this multi-layered approach to history, biography and analysis, Hattrick’s writing style is part poetry, part scientific essay, part autobiography, part investigation into the diaries and letters of (female) artists who have suffered from similar unrecognised or misdiagnosed conditions (Virginia Woolf, Louise Bourgoise, Elizabeth Barrett-Browning). Hattrick’s book reminds me somewhat of her stablemate Maria Stepanova’s In Memory of Memory. Some illnesses have a beginning a middle and an end. Some are circular. In this illness is like life. Illness is part of life and even without the jargon of ‘recovery outcomes’ people can still lead valuable lives. This understanding seems to be entirely missing from society’s modern (or perhaps not so modern) ideas about disability and validity. Remember the word ‘invalid’? It’s been outlawed but the thinking is still there.
Accepting chronic illness may be its own outcome. But as Hattrick points out, accepting chronic illness is not the same as accepting bad care or bad politics.
I heartily recommend this book for anyone suffering or merely interested in the subject of chronic illness, or just as a valuable read.