What does being diagnosed with a serious disease mean to you?

What does being diagnosed with a serious disease mean to you?

This is a really interesting question, and oddly, one no doctor has ever asked me.

Talk about a great open-ended question. If you're at a cocktail party and want to get someone else to handle the bulk of the talking (specifically someone who has been diagnosed with something serious at some point in life), this question will let you off the hook for a good half hour. Come to think of it, I guess that explains why doctors don't ask that question.

So what does it mean to me? At first, it meant an escape from an unhappy life and a fresh start. Then, it meant a choice between either working constantly at being healthy or just giving up and taking drugs and powering through, settling for less than optimal health and not looking my best. Now, finally, it means achieving balance between taking care of myself and taking care of everything else. But I know this now: I have to put myself first, or there won't be any of me to put anywhere else.

read what other lupus patients had to say about this question at the Lupie Log:
http://tinyurl.com/4pbe8e4


Carla Ulbrich, The Singing Patient
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Humorous songwriter, Speaker, and Author of "How Can You *Not* Laugh at a Time Like This?" Get the book: http://tinyurl.com/348hroc

hear the songs: http://www.thesingingpatient.com

Book Synopsis: Heartsearch: Toward Healing Lupus

I stumbled on this book via Amazon.com
Heartsearch: Toward Healing Lupus by Donna Hamil Talman

When I saw the description of the book, I knew I needed to read it, because it tackled a question I've been wondering about ever since my diagnosis: is there a connection between emotions and lupus? Is there a personality profile for a lupus patient (similar to the profile of heart attack victims being type-A overachievers)? Was lupus a metaphor for some specific unresolved emotional conflict?

Since the author is both a lupus patient and a psychotherapist, I was intrigued about what she might have to say, to say the least.
I was sick for 2 years, then diagnosed in 1993. I didn't have internet- was there even a public internet in 2003?- so I spent a lot of time in the library, writing letters, and on the phone. I read a lot of books on body-mind connection, and although this book is copyright 1991, I never found it 'til now. In fact, I think it's out of print, because I had to buy a used copy.

The book has a lot of personal detail in it, almost like reading a diary. The first chapter describes an orgasm in detail. I don't think I would have the courage to write and publish anything so personal. And I imagine some folks are going to be a little shocked by it- but therapists, I'm sure, are accustomed to talking about such things openly.

The author was married and had a young child at the time of falling ill. I can only imagine how much more difficult it must be to go through this with a young active child, though she does a pretty good job describing it. Being married when first getting sick., which I was not, seems to have its own upand downsides, as there is someone there to help, but on the other hand, they must feel like this was not what they signed up for when they got married to a healthy person! All in all, it's a vivid description of what it's like to go through working, being married, raising a child, and dealing with doctors when sick with a confusing illness. If you don't have any idea what it's like before reading the book, you will by the end.

Now, the subject of lupus as metaphor, what intrigued me most into buying the book. What seems to be a common thread among lupus patients, from what I've read in this book, Bernie Seigel's Love Medicine and Miracles, and what I am now reading in Lupus Novice is this: trouble with authority and unmet needs; blocked feelings, long, sadness; and a need for nurturing because of lack of early nurturing (of course a devastating illness is also going to cause a need for nurturing, and dealing with our ridiculous health care system is going to cause problems with authority. But I digress..) If there is a profile, we tend to be rebellious and angry.

The profile for someone with RA was listed, and RA is also chronic and autoimmune; shy, self-conscious, inhibited; martyrs, perfectionists; nervous, moody, tense; unable to express anger; convinced their mothers had rejected them and their fathers were very strict. and the weirdest one: fond of sports. Of course, RA is not lupus, but it's an interesting starting point.

Regardless of finding the exact profile for lupus, which the author eventually decides is less important than pursuing health (I agree- and yet, I still wish someone would find the profile of a lupus patient!) and dealing with unresolved emotions, which is only going to lead to better health for anyone, the author seems to have found a better level of health (though not without a daily "maintenance dose" of the dreaded prednisone) through natural diet, meditation, allowing her self regular self-case such as weekly massages, cutting back on work, taking caution in the sun, writing, and, yes, having released pent-up emotion.

As the author is an academic, sometimes the writing is a little lofty and graphic, but the questions she asks are profound and interesting (I'm so glad to hear someone else voice the same questions!), and she is well-read, which I appreciate. Her journey gives us all some starting points for our own. And I wonder what she's up to now. I googled her named and got a photographer. Think she's moved on to a new profession?

I've got a bunch more books I'm reading and old ones I'm re-reading. I will continue to post synopses of them here.