A recovering ME/CFS sufferer, I read this book as research
for a book I intend to write myself. It proved very illuminating in so many
ways. There are differing degrees of this pernicious and horribly life-limiting
condition and most of them are represented within the pages of this book.
Consisting of letters written by sufferers, carers, friends,
family members, medical professionals and recoverers, it spans the wide
panorama of experiences well. There is bitterness, hope, wonder, anguish, love,
misery, pain, humour, anger, frustration and joy within these pages. There are
examples of frustration with the ignorance of both the medical profession and
the general public expressed effectively by both sufferers and carers.
Some of these accounts will make you cry, others will have
you smiling, yet others will make you feel like shouting out loud, swearing
with the frustration of it all. It’s an emotional roller-coaster, and I make no
apology for that cliché, as this condition is one of difficult slow climbs
followed by devastating drops.
If you’re s sufferer, carer, friend or family of someone
with the condition, but, most of all, if you’re a medical professional, you
should read this. It will educate, and hopefully squash those damaging and
ignorant prejudices that blight the lives of so many who battle daily with this
condition.
Well written and thoughtfully compiled, it contains the
words of people who know what it’s like, who have lived with or are living with
this devastating complaint and its multiple consequences. And, if you’re just
an interested member of the public, wishing to expand your awareness, this is
definitely for you. You’ll see that I’ve used the word ‘frustration’ repeatedly
in this review: it’s a word that sums up one of the most commonly experienced
emotions of sufferers and their carers. Consider: this is a condition that is
generally experienced by those who are most active in society. Imagine, for a
moment, the consequences of having such activity suddenly removed, and you
might start to appreciate why frustration is such a universal experience.
I’d like to see everyone read this book. I know that won’t
happen, but I hope that many will make the effort. You’ll find it worth your
while.
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