Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness

by Paul J. Donoghue, Mary E. Siegel

Unlike a leg in a cast, invisible chronic illness (ICI) has no observable symptoms. Consequently, people who suffer from chronic fatigue, chronic pain, and many other miseries often endure not only the ailment but dismissive and negative reactions from others. Since its first publication, Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies to thousands of people who suffer from ICI. Paul Donoghue and Mary Siegel teach their readers how to rethink how they themselves view their illness and how to communicate with loved ones and doctors in a way that meets their needs. The authors' understanding makes readers feel they have been heard for the first time. For this edition, the authors include a new introduction drawing on the experiences of the many people who have responded to the book and to their lectures and television appearances. They expand the definition of ICI to include other ailments such as depression, addiction, and obsessive-compulsive disorders. They bring the resource material, including Web sites, up to the present, and they offer fresh insights on four topics that often emerge: guilt, how ICI affects the family, meaningfulness, and defining acceptance.

Genres: Health, Nonfiction, Disability, Self Help, Illness, Medical

304 pages, Paperback

First published July 1, 1992

Reviews

[Jodi · Rating 3 out of 5]

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.

[Morgan · Rating 1 out of 5]

I was really looking forward to reading this book, only to feel disappointing and angry upon finishing. The first half was okay and mostly a summary of what it's like living with different Invisible Chronic Illnesses (ICI). The biggest issue in this part was that they had an incorrect definition of endometriosis. Seriously?? You'd think with a new edition they'd fix that issue but I guess not. Endometriosis is NOT, as they claim "endometrium [that] also implants itself outside the uterus." Endometriosis implants are NOT the same type of cells as the endometrium, but are DIFFERENT; they are similar, but different. The difference is huge, and this type of misinformation is detrimental to getting effective treatment, and is part of the reason why it's so hard to get people to understand the disease. Do better.

The second half is where it became painfully obvious it was written by psychologists and not medical doctors, which explains why they don't even know what endometriosis is (still, no excuse). This half was repetitious, psychological bs, mostly about the power of positive thinking (insert eye roll here) and effective listening. While these are certainly important things, there are more effective coping strategies and advice for coping with ICI without focusing solely on *feelings*. The chapter that ticked me off the most was "Getting and Keeping the Attention of the Healthcare System," which instead of offering practical advice about navigating said system, it focused on doctor's feelings and more about effective communication. NOT HELPFUL. Basic, repetitious information, and misleading chapter title. Their only saving grace was the unobtrusive biblical advice, which was beautiful and sound. However, the rest is based on anecdotal evidence, oddly placed and misused Shakespearean quotes, and repetitive advice based only on feelings. I do not recommend to any ICI patient, particularly not any with endometriosis.

[Nolwenn Juno · Rating 5 out of 5]

This book is a must-read if you are suffering from ICI (invisible chronic illness)and have been diagnosed after years of being put down by doctors of almost every possible specialty.

It tells you not so much about diseases than about how people deal with being at times extremely sick and incpacitated while looking perfectly healthy for most people.

Anytime someone sees me, they say "well, I don't understand, you look fine"... they wonder about the sick leave. Even down while I almost died at the hospital they still said the same. Because a few afflictions have the capacity to hurt and destroy you without a SINGLE external sign.

As you go from doctor to doctor, they think the same as your friends and family (except your close family who actually see you suffer a lot and feel impotent) and you end up at the door of a psychiatrist with a recommendation from your GP.

I was soooo relieved when they finally found out (a disease that is NOT mentioned in this book, spondylitis) , so relieved to know that I was right from the beginning. I felt legitimate again and reading this book makes your realise a lot of people experience the same struggle.

You were not alone, feels good to read.
That is true for the first part though, the second part is not as interesting as actually reading on CBT or non violent communication (which it is about), but still, I owe such people for sharing their experience.

[Angela H · Rating 3 out of 5]

How do you rate a very research-y nonfiction out of 5.

[Susan · Rating 4 out of 5]

Probably one of the best books about coping and living with chronic illness shortly after a diagnosis that I've read. There is valuable insights and information in this book particularly about how to talk with family, spouses, caregivers and doctors about your experiences. It gave me a lot to consider and with minimal bullshit, about living as well as possible in a body that is not generally well. It is dated, and even the updated version reads a bit dated, but the advice is still excellent, if not as broad in scope as it could be. Four stars- one I'd recommend for other people living with invisible chronic illnesses.

[Cranky Commentary (Melinda) · Rating 5 out of 5]

Thank you, thank you Paul J. Donoghue!!

This is a must read for anyone with chronic illness. Most self help books for chronic diseases are tomes of detailed, basically useless information followed by impossible to follow treatment plans (so no one can fault the author when the book turns out to help no one at all). For anyone who is worn out with illness, a book the size of a Stephen King novel is just too daunting anyway! (Well, at least if it’s not as fun to read!)

This little gem has short, common sense chapters, followed by study questions that can be used privately or for a support group. It has Biblical references, but they are helpful rather than “preachy”, so you need not be Christian to use this book. The book’s aim is not to find a cure, or prayers for healing, but offers some coping skills for daily living and interactions that I honestly had not thought about.

It is useful and uplifting. I highly recommend this one.

[Casey · Rating 1 out of 5]

I loved the first part of this book. It talks about "Invisible chronic illnesses". The words used were validating and it was nive to have words to describe what I've always felt. 
However, feeling understood in the first half had just built up my expectations of how helpful the second part would be: on how to deal wit ICI, talking with family, doctors, etc. However, I found notjing new, just trite, rehashed ideas. 
So if this is the very first time you've encountered the subject it might be possible. But let's face it. Most of us with ICI (Invisible Chronic Illness) have heard this advive from friends, enemies, doctors. So it's highly likely that these ideas wont be new to you either. 
HARD PASS on the helpfulness of this book!  

[Michelle · Rating 2 out of 5]

First half was wonderful, the second half was garbage. They must have come up short in pages and tacked on a bunch of psychological and cliche mumbo jumbo. Read it, but as soon as you start feeling talked down to or like you've heard all this before, put it away. Otherwise you're going to waste your time like I did!

[Rachel · Rating 3 out of 5]

Read in 1996, an earlier version; my review from then: Two practicing psychologists who have chronic illnesses write about it. Good, but it's mostly standard techniques psychologists use when counseling. I'd like, along with info on being in touch with how you feel about, for example, a misinformed doctor, more info on how to figure out a practical way to handle that.

[Marsha Altman · Rating 3 out of 5]

Good summary of living with an invisible illness. Some good advice, some new age crap but not very much of it. Also, made me pretty sure I have at least two extra diseases.

[grace · Rating 4 out of 5]

This book was pretty good. The first section went over what an Invisible Chronic Illness is with examples and anecdotes, and how it affects someone not only physically but socially and psychologically. The second section is about learning to cope with chronic illness. I found it very helpful and even took some notes. It reflected some of what I have been learning lately in talk therapy, such as confronting irrational thoughts and learning better ways of communicating your feelings and listening to others feelings. The end of the book includes reading lists and contact information for various associations related to the chronic illnesses in the book.

This was first published in 1992, with an introduction added in 2000 so some of the information and contacts may be out of date. I noticed a lot of the books on the reading lists were older as well. Also, there is a slight Christian/religious slant to some of the sections which I found a bit out of place, but it wasn't very overwhelming and was easy to ignore for someone who isn't Christian or religious.

[SBC · Rating 4 out of 5]

As someone who lives with a number of ICIs (invisible chronic illnesses) I found this book helpful in the way it made me feel understood. Since one of the many problems of having an ICI is that other people often don't get it, it was reassuring and comforting to read the case studies of other people who suffer in the same ways. That was probably the main thing I got from the book, more so than any practical guidance.

[Tempest · Rating 5 out of 5]

Great book for those with chronic illnesses and their family members. It offers a good understanding with good examples. The examples are only limited to certain illnesses, but they do a good job of explaining the symptoms of chronic illness relatively well.

[Marian Groome · Rating 4 out of 5]

Very empathetic view of chronic illness

[Leisa Cadotte · Rating 4 out of 5]

Very useful and practical guide for newly diagnosed patients of chronic illness.

[Katie · Rating 5 out of 5]

If you or someone you know has an invisible chronic illness as I do....I highly recommend this book!

[Naomi Ayala · Rating 4 out of 5]

Well-written and relatively concise. Helpful information and balanced perspectives: patient, family, and health care provider. Definitely recommend.

[Tamar · Rating 4 out of 5]

Really liked this book, helped me a lot. I miss one thing though: that the mental challenges of being physically ill can and do often also have a physical cause.

[Luisa Di Landa · Rating 4 out of 5]

3.5

[Ruby · Rating 3 out of 5]

This wasn't terrible, but it wasn't the best book on chronic illness that I have read. I found it a little repetitive and heavy on obvious advice, like 'try to find a way to do some exercise' or 'find some time for pleasurable activities'.

I thought some of the cognitive and communication techniques were quite good, bit I felt that they could apply to any stressful circumstance and not just chronic illness.

I didn't hate the book. I just didn't feel like I learned anything new about how to live well with chronic illness. Mind you, I have already read several other books on chronic illness which I liked much better - possibly if this was the first book on this topic, I might be a little more impressed.

[Annm · Rating 4 out of 5]

This is one of the few books on chronic disease that addresses how the person with the illness, and their families are feeling about the illness, the role it plays in their lives, and their lives' roles. I found it more helpful than most books about chronic disease.

[Ago · Rating 3 out of 5]

I agree with another reviewer that the first 3rd was worth the entire read as it describes illnesses. The remainder is valuable in that it helps lay people approach medical professionals and the psychological help is interesting to someone not familiar with the techniques.

[Terri · Rating 5 out of 5]

A helpful guide to people suffering from chronic illness. The best book I've seen on the subject!

[Candie Looney · Rating 3 out of 5]

Great read but I got the impression the second half was an afterthought. Overall I gained a lot of insight.

[Crystal · Rating 3 out of 5]

This book had really good info, but I thought it was too long and had way too many case examples.

[Lynda · Rating 4 out of 5]

Has some excellent info, but it also has some that I found questionable.