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, by Paul J. Donoghue
Free Ebook , by Paul J. Donoghue
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Product details
File Size: 562 KB
Print Length: 308 pages
Publisher: W. W. Norton & Company; New edition (September 17, 2000)
Publication Date: August 29, 2011
Sold by: Amazon Digital Services LLC
Language: English
ASIN: B005HG5232
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Amazon Best Sellers Rank:
#133,624 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
I have been reading a lot of books lately on coping with chronic pain and disease. Many of them have been very good, very encouraging. I think that is the main reason we buy such books - encouragement. Something that says we are not alone, we are not crazy. This book does an excellent job of handling the emotional side of chronic illness. It explores in depth the reasons a patient would often rather receive a hard, even life -threatening diagnosis like MS, than be given a "soft" i.e.. indefinite diagnosis like chronic fatigue or fibromyalgia. I used to carry my neurological test results with my as some kind of validation, and there is actually a woman mentioned in the book with the same behavior. The need to be believed is greater even than the need for support.I have Charcot Marie Tooth, a crippling and painful hereditary neuropathy. It has progressed to the point where I need a cane to walk and my disability is obvious, so i don't (usually) tuck my papers in my purse. This is the first of at least eight similar titles I have read which mentions CMT. It is a rare disease. I would have given a five star review if only for that ( waving! Yea, that's me!). I do however think that this book does an excellent job of providing emotional support and reassurance.My only quibble is that it could be stylistically better. I would have loved a chance at editing it. Some words are overused or poorly chosen, but this in no way affects the usefulness of the book.
Just started reading & book has already changed my life! Validated 32 years of doctors not knowing. Pain amd fatigue all the time. No one understands. Not mother nor father nor fiance nor anyone whole life. Except the author. My whole life makes sense and gives me strength to keep fighting for my diagnosis. To be my own advocate I forced myself to page 37 despite narcolepsy. It validated my whole life. I would include pic if I could. What I've been trying to explain to everyone in my life my whole life. I can't not think about my pain and problems if no one had a name for it. Can even begin to treat it. Believes me. I have 2 doctors that do. But no one else does. This book gives me the courage to keep going. To fight for diagnosticians and immunologist and to fight for myself. I found answers in it to questions I've had over 15 years the first time I started reading it. If you need help, please get this book. I'm an intelligent person and read EVERYTHING in search of answers. This has helped me more than anything book or website or anything. More than i love felt supported believed and empowered with answers in years. Get it if you need help. Btw, I fell asleep reading it. Literally. Have narcolepsy. Among countless other things. Whole life have been trying to figure out what's wrong with me. Have fibromyalgia but no insurance. Have suspected by many doctors undiagnosed immunodeficiency, they cannot figure out which one without insurance. Also have herniated lumbar disc. Now have at least reactive arthritis if not rheumatoid arthritis. Perhaps ankylosing spondylitis. Always thought had IBS turns out Crohn's disease. Long story. Book gives me courage to keep going when pain is a 9 daily on comparitive pain scale and I've been to er twice in 2 weeks, have list of doctors a mile long to get records from. Have over 10 specialists to see, more keep getting added. This gives me courage to push through when I don't think I can. When nothing else does. And I'm only on page 38. I've spent my life researching and looking for answers, hope, anything. This book has it. BEST BOOK IN MY LIFE
THANK YOU for writing this. I've been diagnosed (finally) with an ICI (invisible chronic illness) after 8 years of doctor hopping. After 8 years of empty results and not always hidden insults from the medical community. After being threatened to lose my job because I was absent so often while remaining at work was a daily struggle... being reproached to choose my job over my family because I came back from it too exhausted to do anything. I was told to stop complaining after endless nights without sleep or entire weeks spent dealing with exhausting pain. I was fed psychotic drugs because it was all in my head and I hap "ups and downs"...No wonder that I had a huge smile on my face when the doctor at the hospitable, after a huge flare up of the disease, announced that I had an incurable disease that sent 1 person out of 5 in a wheelchair. My close friends asked whether I was relieved, people who suffer from ICI did too, the others (the majority) wondered why it made me happy. Read the book and you will see I wasn't the only one.I will no longer let anyone say I'm a hypocondriac. But it is true that these diseases are very painful, exhausting and completely invisible to other people and therefore do not bring compassion the way ICI sufferers could be entitled to. This is very well explained in the book.When you've been suffering from an ICI disease and have gone through all the struggle, sometimes for years, it feels good to read you're not the only one, that they felt the way you did: the guilt, the loneliness, the pain eating up at you, the doubts which make you wonder wether you're mad...This book is a MUST READ for anyone who suffers from ICI or for the people surrounding them.Truly it is a gift, thanks Paul and Mary for this true gift ;) (I do not know you but you sound like friends already).
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