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Useful in parts but specific to one illness pattern to some extent
on January 29, 2012
This book was very good and seemed to offer lots of useful advice but it seemed to be aimed at those with a certain type of disease pattern, perhaps the type which the authors were most familiar with. (Which is fair enough!)
This book is great, probably, if you have a non-severe and/or relapsing and remitting disease. But I found very little here for coping with very severe disease with no breaks!
The book very much asssumes throughout that patients will have periods of illness and then periods of wellness, or at least periods of being slightly less unwell.
This just does not apply to Myalgic Encepahlomyelitis, and especially severe M.E. - nor to many other diseases I am sure. As such for those of us who fit this description, much of the advice in the book is inappropriate and can't be used and is also slightly depressing. (To read a book which assumes you'll have better health periods now and then, when this isn't the case and hasn't been for many years can make you feel a bit sad.)
The problem of being bedbound, housebound or unable to speak for long periods, or write or have visitors, is also not mentioned at all.
I don't mean all this even as a criticism of the book really, as I am sure this book is suitable for many poeple and the authors had to write what they knew. Also, when a book has 'invisible illness'in the title, I suppose this does to some extent suggest it covers diseases which do not leave you obviously visibly ill such as bedbound or housebound. That would be a very fair point as well of course. (Although many other diseases the book discusses are called invisible when really the patients do look ill, perhaps just not 'ill enough' for how disabled they are for some critical bystanders!)
But I just want to add this comment about it not fitting all disease types as well for the benefit of readers such as myself who will not get as much out of this book as some others might. Horses for courses!
This book seems great for those who do fit these disease types though. It contains much more than the usual superfical and commonly given advice. The authors clearly know this topic well and are passionate about the topic.
Jodi Bassett, The Hummingbirds' Foundation for M.E.