Migraine

I just finished reading The Lonely Patient: How We Experience Illness, written by Michael Stein, MD. I had skimmed through some of the older threads here and saw it mentioned, so I checked it out from the library.

Dr Stein divides his book into four parts, mirroring the four main emotional reactions to illness: betrayal, terror, loss and loneliness. He discusses the illnesses of both his patients and some close to his heart in the context of the four emotional reactions.

In the first part (betrayal), he discusses a patient he calls "Joanna", a chronic pain sufferer. Her story hit closest to home for me. So much of what he says reflects thoughts and feelings I've had, and I'm sure others here have had as well. I'll quote a brief passage:

quote:

A part of Joanna suspected she might be crazy. Visits to four doctors brought no explanation for her pain. Although she sometimes feared that whatever was wrong would kill her, she was pretty well convinced her pain wouldn't; it was not a terminal illness, just pain. But some piece of her wanted it to be a dreaded disease so she could explain herself to people. If she looked ill - lost weight, lost muscle tone - people would believe her, accept her illness. To appear healthy almost seemed a liability when dealing with people who saw her wince. That her pain made no sense, that it was incoherent and hidden, made her crazier still.

I can't say I enjoyed the book, but that's because for me it was a hard subject to read about. Reading this book was comforting in that it shows me I'm not alone (and that there are compassionate doctors out there). It's amazing to read Dr Stein's insights into pain and illness as the stories are not his own. I am glad I read the book, as it helped put words to much of what I feel.

So, overall, it was a good book that was worth reading, but it's a difficult subject and does not make for light reading.

MJ,

Thank you for sharing this info with us! I've been thinking about reading this one. I'm sure it was a tough read! But I always think it's worth it if you find even one valuable tidbit of information...

I'm gonna look for this in my library tomorrow!

jenny

Glad I could help, Jenny! Let us know what you think of it.

That quote was enough to peek my interest in what else he has to say. Sounds as though he listens well enough to his patients that he has developed understanding. Thanks for sharing.

I checked for this book at my library (through the internet) and found out it is only available as an ebook which was facinating to me. I have never done that before but was thankful for the ease in aquiring it.

I really liked it because it was freeing to me. Many of the things that I thought were unique to me, that I kept secret because I thought I was crazy, are speeled out in the first chapter. It lifted a huge burden of self-doubt and self-blame.

I am almost finished with the second chapter now, entitled TERROR, and there is less to identify with there because he is talking about getting a potentially fatal diagnosis and the terror one experiences. Still good information.

Three universal quotes that I underlined to share here:

quote:

...it felt far away, and I was comfortable keeping it there. In some small way, I feared that if I recognized pain, if it came too close, it would somehow cling to me.

quote:

...Pain is always new to patients, but repetitve to doctors. Everyone gets used to the patient's pain except the patient.

speaking of the doctor and the patient he writes:

quote:

...together we loathe illness. Together, we can make a show of solidarity and defiance and concede little to illness and pain.

There is much more in the book, some priceless but too lengthy to share here. Several passages I was stopped in my tracks thinking Wow that is not just my weird brain, other people feel that way.

I would recommend this book, though deep and sometimes difficult, liberating. I am anxious to be able to read the other two sections.

Hope2bvertical, I'm glad you are finding it as worthwhile as I did. My experience reading it sounds very similar to yours - there's so much about my illness I've kept secret, thinking I was the only one who could possibly feel that way.

Like you, I found the second and third chapters less relevant to me, but the whole book was completely worth the read.

Let us know what you think of the rest of it!

It stirred up strong emotions in me, but I have rarely read anything that better captures all the feelings one experiences when illness controls your life. I think it's a must read and would be a wonderful book to share with friends and family members who want to better understand your perspective on your situation. Great book!