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on May 16, 2016
Great book. Ahead of its time. Inspired me to start the blog The ICI Experience dot blogspot dot com in 2007. Now it seems like everyone is writing about this concept. Or maybe it's just the crowd I hang out with.
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on October 26, 2015
Fascinating. Deepens one's understanding of what i'ts like to have an 'invisible' illness.
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on September 17, 2014
Written like a bad self-help book.
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on February 19, 2014
This book truly validates the issues that those who have chronic disease live and struggle with on a daily basis. It also helps those who don't live with chronic disease to understand.
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on January 13, 2014
this book describes to a T exactly what it's like to live with a chronic illness that is not visible to the outside world and provides very interesting real-life stories about people who are just doing just that with grace and humor and wisdom and strength and empathy for themselves and others like them. It's also a very good book to support those who love people with chronic illness and help them understand what the illness sufferer is going through.
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on January 11, 2014
I get the "concealed chronic illness" thing, I really do, having 4 rare biopsy-diagnosed auto Immune diseases myself. I try to make it so that no one knows my pains, so that no one, including myself, makes excuses for me. It's just another bump in the road. There are always people on this earth whose health conditions are much worse than our own. Get up off your pallet and go help them.

And then to read this completely unscientific book, where folks complain about things that have no authentication, professional diagnosis or even medical names. Things like "really bad headache", and "constant nausea" are so subjective that they are without medical justification. There are many folks truly Suffering with a capital 'S", folks who have a brain tumor or MS or CP or AIDS - they know the name of their future killer and so do their doctors. And they face that demon every day, and battle it again.

And yes, there are.a few in the book that do have a real diagnosis, but they are the exception and not the rule - fibromyalgia is very uncomfortable, but not a killer. If you truly feel bad, pursue it with a doctor until you find out what it is, or what it is not - or give up complaining and start seeing your glass as half full.

Without real medical names for their symptoms, there is the thought that these folks may be maligners or hypochondriacs - if you want to have your pain taken.seriously, get a real medical diagnosis from a real doctor, and stop thinking only about your pain - and try to do something to help someone else who has bigger problems than you do, When you do that, at least momentarily you will feel better - I promise. Live to help others a& you won't have time to obsess about you own discomfort.
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on December 13, 2013
This book is great for anyone with chronic pain and for family and friends of chronic pain suffers.
It is infomative, supportive and to the point. One of the better books i have read on chronic pain.
I would recommend this book to everyone.!
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on May 10, 2013
This book exceeded my expectations and thoroughly gave an in depth overview of all of the chronic pain conditions, from the chronic pain sufferers point of view.
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on April 29, 2013
Others have done a fine job of synopsis of this book, explaining what is in it and the quality of the author's writing which is stellar. I want to give another account, one of someone who has been reading about chronic pain, fibromyalgia in particular, since 1989. The reason? When you've had chronic pain for longer than 10 years, chances are you are well abreast of the medical information about your condition; the emotional aspects of your condition never seem to stay static. This book reaches in and address the hardest part of being chronically in pain; your psyche. We have issues dealing with people that are forever exacerbated by the problem "we look fine". Just this week I had one of my Facebook compadres complain "that only if I had cancer or something they could see, they would understand why I am limited in my ability to do things, to go to social functions. I don't want to be limited, I just am." We are constantly having to "trump" our condition. This means that we end up having 'pissing contests' with one another about who is having 'more pain' or appears more limited, because our doctors STILL do not see us as sick, limit our medication use (out of fear of addiction in the age where 'everyone is addicted to something', which was told to me by a pain clinic director), they fail to run tests past a point because they 'just don't see the point.' We become under treated, and often suffer needlessly. This book touches into this, addressing the 'underbelly' of pain; because we appear fine, there is an assume that we ARE fine.

Therapists still do not work well with chronic pain patients, because they themselves tend not to be chronic pain recipients themselves. Treating the emotional aspects of chronic pain needs a special hand, one that understands our 24/7 on going relentless experience of having pain. I have been told by therapists, "I don't know what I would do if I had pain longer than a day or two, I probably would crumble." This response is exactly what creates a level of despair in clients; the reality that their own therapists who are supposedly trained to deal with their anguish can not only NOT understand what they are living with, but would not even have the ability to conceptualize how they would find hope! Doctor's are still forever telling us our problem is emotionally based; that the depression we find ourselves in is not from HAVING chronic pain, but that depression caused this condition, never realizing that our lives may have been just fine prior to the onset of not being able to sleep, that our quality of life is diminished by this pain, and so therefore the depression we now are facing is about loss.

The drug companies assist this theory by giving us yet again, another serotonin drug of one kind or another (SSRI, SNRI, as well as tricyclic antidepressants, et al), still asserting that pain is just about serotonin depletion, and when these drugs fail miserably, we have few if any drugs to turn to for relief. Most of us keep being returned to this never ending cycle of have your tried this antidepressant, anti seizure medication, or very old tricyclic, that was tried often when we were first were diagnosed, only to get another doctor who demands we start over again! Sadly, the internet has become the hunting ground for "quick quack treatments" (I TOO had this condition until I drank, ate or took x thing, and am now healed!" Has an unwelcoming familiarness because we are desperate enough to try anything for answers, and when doctors rather than turning to tried methods that may work start using 'platitude modalities' (think happy, be happy or how to be out of pain by not believing your in pain), this book literally TELLS you that this so called method of practice will and often does fail to work!

This book may have come out in 2004, but is still very pertinent in 2013. The fact that there maybe genetic testing (as one other poster thankfully gave here about CFIDS), does not mean we are GETTING these tests, or treatment other than standard physical therapy, limited access to TENS units even if found helpful, and finding a way to sleep still worrisome as I write this; when you are up at the break of dawn, because your body is in torrential pain, you NEED a book to help you off the emotional edge; this is it. This is when a book can be a salvation of sorts. By reading about other's lives, their emotional triumphs and downfalls, gives us knowledge, a place to rest our self doubts, as well as a place where 'someone like me' can be found.

I sincerely hope that other's reading this review understand that my purpose for this review of sorts, is to explain how this book is beneficial to pain soldiers, giving us coping skills, not a review of the material itself presented. Everyone has to judge for themselves, whether a testimonial book is helpful for them or if they are still needing 'meat and potatoes' on the issues they are facing with their illness. This book touches the emotional and relays a little of other's coping skills. I also sincerely hope that other readers will not be facing over 20 years of compounded pain with their conditions, that have doctors that will listen to their needs to continue to fight for on going medical treatment for secondary conditions that they will face living with chronic illness/pain, and finally answers that will allow us to eventually heal.
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on March 26, 2013
This was a replacement for the one I loaned out and came back in pieces. Glad to have it again.
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