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"The Lonely Patient" Book Review

I recently read "The Lonely Patient, How We Experience Illness" by Michael Stein, MD.  I kept a highlighter or pen with me the entire time I read it because after reading the first few pages, I knew this book was going to be one of my favorites, with many relatable stories and incredible insight into what people go through with disease.

The book is split up into 4 major parts, Betrayal, Terror, Loss, and Loneliness.  I have chosen a few selections to share how I identified with them.

"As soon as the patient crosses into the land of sickness, she realizes she has been abducted.  Many of her kidnappers are wearing masks and head coverings.  They do not tell her where she's going.  They carry unidentifiable instruments that could be weapons and move at a frantic pace in unrecognizable patterns...she is in 'No-land, Nowhere,' and has fallen off the map, the world of the knowable."

When I started gaining weight, getting sick, having kidney stones, and watching my body deteriorate before my eyes, it was like something or someone had taken my healthy body hostage.  I didn't know if or when it would be back or where it was or why it left. Through the years of trying to figure out what was wrong, I learned that my "kidnapper" was Cushing's.

"Of course, being along, a patient can't get out of his own way.  Terror is its own obsession.  It is a form of madness that I can hear in a patient's voice.  Terror is the mania of trying to get your mind off your mind.  Initially a patient can't accept that he might be sick, that surgery could uncover something disastrous.  Ill, a patient spins his words over and over until they are suddenly meaningless as a way of not getting used to the idea of illness, of closing off from it."

In the days between diagnoses' and surgeries, I spent many nights awake, scared of what would happen if I fell asleep.  I was terrified that surgery itself would kill me, because at that point I was the sickest I had ever been because it took so long for someone to take the time to come up with the correct diagnosis.  I think a lot of patients have the same sleepless nights, afraid of what will happen.

"She had a constant sense of mismatch; there was an incongruity between what she was and what she saw, between what she thought she was and what she found in her reflection.  She felt deceived and stupid.  'More than the ugliness I felt,' Lucy Grealy wrote, 'I was suddenly appalled at the notion that I'd been walking around unaware of something that was apparent to everyone else.  A profound sense of shame consumed me.'"

I used to think I had the opposite kind of body dysmorphia than most people, because after I got sick and started gaining weight, I avoided mirrors, and was shocked when I saw pictures of myself because I thought of my body as much smaller than in reality.  Of course, I glanced in the mirror almost every day in the bathroom, or walking by our floor length mirror in the hall, but I don't think I ever really registered what I was seeing.  I had the same experience recently, looking at pictures from a recent event.  I was wondering why I couldn't find myself in any of them when my mom pointed me out, I was shocked to really see old, regular self for the first time!  Without the disfigurement of Cushing's, without knowing someone was taking a picture so I wasn't posed, it was just ME.

"Who at work knows the inconveniences of her illness, the series of discomforts, each tolerable, but one after another allowing no rest?  She doesn't "look" sick, so she must not be.  The fact that she can pass among strangers while holding this news close, revealing nothing to them, exacerbates the loneliness of her illness. Somehow she manages the grind of daily life while illness looms over everything, shadowing, trivializing, obscuring what must be attended to.  Patients become so used to going it alone that they develop defenses, evasions, smart-aleck remarks to release them from the obligation to engage in the subject of illness when it arises."

When I was first diagnosed with my pituitary tumor, I was strangely calm.  I joked with my roommates about getting out of papers and delaying a group project presentation because I had a brain tumor!  In my head, I was terrified, but didn't yet know how to deal with the new reality of my illness. I have gone through new diagnoses over the years and some I can talk about in a "medical" sense with anyone, it's a way for me to distance myself from IT.  If I can talk about it like it's someone else's problem, I don't have to go through the emotional mess of dealing with the fact that it's MY problem.  I have found only a few people that get it.  My close friends and family of course are open and willing to talk about it, but it's hard to try to explain something to someone when they've never gone through it.  I think people with rarer diseases are at a disadvantage emotionally.  You can walk into any hospital and find cancer, or MS, or infertility support groups and be "un-lonely" there, but I had to meet someone from clear across the country to finally be able to say I TOTALLY UNDERSTAND.  It's a validating and emotional thing to talk about scars and illness and how it affects all of your normal things in life.

I hope you get the picture about this book.  I wish I could make the entire world read it.  If you are ill yourself, or if you have a friend or loved one who is, you absolutely owe it to yourself to read this book.


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