I spend a lot of my time reading: It's something I can do at almost any pain level, and oftentimes I rely on it to distract me. Since I read so much, and I tend to be opinionated (who? Me?), I also write book reviews for various websites. (They pay me in books, which is, as my mother said "as good as crack" to me, so we get along just fine.)
I find that I am having the hardest time getting past the second chapter of one particular book: I'm not going to name it just yet, because I desperately want the book to change course in the next few pages & improve. So far, though, it's a huge disappointment - yet another self-help book, a la The Secret - that claims that you get to choose the course of your life.
Which, I believe, is a giant load of crap.
"It proposes a simplistic personal solution to a problem that is not subject to self-control.”
P69 ,The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register
I maybe a tad overly sensitive to this subject right now, because of an e-mail I got the other day from my Soon-to-be Sister-in-law: She wrote asking for help planning my niece & nephew's birthday party, and somehow veered into more personal territory, asking about my recent hospitalization. We talked a bit about how the doctors really don't know all that much, and how frustrating it all is; and how sometimes I feel I am just marking time, trying my best not to aggitate the beast that is my pain, when she completely blindsided me with the following statement -
I just feel you need to find your independence and if that means dying to come back to life so be it. Easy for me to say right? It's crazy, one part of me says "poor girl" and the other says "suck it up" WTF! And you know I am not the only one thinking that!
I don't think I can adequately describe the kicked-in-the-gut, all over chill I got, just reading that. For her to say something like that to me, for her to have the idea that my illness is somehow something I can just "get over" if I try, it's a denial of reality & a very real sort of betrayal.
Also, I got the impression from her "I'm not the only one" and other parts of the e-mail, that she and other family members have discussed this, and that they feel similarly, they just don't say it to me.
I don't know how else to explain it, but the idea that the people close to me... not outsiders who don't see the everyday struggle, or the media, or whoever... but the people around me - who see that sometimes I am so exhausted I cannot speak; that sometimes I can't get my feet to point in the right direction; that I have to leave the party 15 minutes after arrriving because there are too many smells - that these people could still have the even slighest, slimmer of a doubt that I am not in control of what my body does ? Well, stricken might be too subtle a word for how I feel.
"Today, when alternative therapies are available in every mall in the country, the ill person is blamed not only for getting ill, but if the therapies fail, he is also blamed for not getting better (“he gave up too soon,” “He didn’t want to get well”).” Under the Medical Gaze Susan Greenhalgh, 2001
This wasn't the first time this has happened, not by far: When you've got an invisible and often controversial illness (or more than one, as is my case), you find yourself justifying your illnesses more often than not. When I first got ill, my siblings often accused me of faking, or exaggerating, my symptoms. One of my cousins told my parents to send me to boot camp; my grandmother suggested prayer as a cure.
In the case of my family, I've had to educate them all over the course of years, just as I've been educated. Initial ignorance of my diseases or their symptoms, treatments, implictions &/or limitations is no longer, in my opinion, a reasonable excuse. Even Soon-to-be Sister-in-law has known me now for 7+ years, and I've been ill the entire time.
So I find it hard to say nothing when self-help book after self-help book, celebrities, religions & much of the general public praise the idea that "what/how you think is what/how you'll live:" If I just thought that I wasn't ill, I wouldn't be ill.
Sure: why haven't I thought of that before? Do they really think if it was that friggin easy, anybody, anywhere would choose to be ill?
"As our society grows more and more health-conscious, good health, too, becomes a virtue, and its absence a vice.” P69 ,The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register
Listen, I don't discount the Mind-body connection: I know that stress exacerbates my symptoms, just like being stressed out might make your headache worse or being worried might make your stomach hurt. There's truth in that. And there's something to be said for corralling negative thoughts when you can, so that you don't spiral down into depression.
But the idea that I am attracting illness to myself, or not doing everything in my power to heal? That's BS. Major BS.
*In that vein, I wanted to post the SNL Skit that mocked "The Secret", but couldn't find it posted... Here's a line from a review of it, though: "After Oprah and her guests spoke to a man in Sudan via satellite, telling him he could end the genocide by embracing positive thinking, Oprah said: "When we come back, John Travolta will tell us how he used 'The Secret' to make Wild Hogs." *
Between the book & this e-mail, I've been thinking about this a lot this week, and I really can't think of any answers: It hurts to be this sick and to know that there are people in my famiy who doubt me.
Who think I could do something more.
And, knowing that they doubt, makes me doubt myself. Which is something I don't need.
It is hard enough. Having these stupid diseases is hard enough. I'm hurting and I'm sad because I thought I could count on my family, at the very least, to not make it harder.
"...unsolicited and especially unwarranted, advice works as a steady reminder that few people really understand the nature of your illness or care deeply enough to be informed.” P69 ,The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register