...is what I've decided to call the feeling after the first blog post when you think, "Um, ok, so I set the thing up and introduced it. I'm not sure I have as many thoughts as I thought I did."
I'm going to try hard not to let this blog become a big whine-fest, especially since I have yet to find some other sufferers to commiserate with. But the thing is, even if I find them, I don't really want to commiserate, per se... I guess I just want to talk to someone who knows how I'm feeling. I find myself being resentful of a lot of people when, trying to help, they encourage me to do something that I don't feel well enough to do. I know they're trying to be supportive, but for some reason, it doesn't feel that way to me. It feels more like, "Hey, I bet you're faking" or "Stop being lazy and go do something." So, I haven't really worked through that yet.
Oh, but I am becoming quite educated! I now own three books on the subject, which I think illustrates one way in which I am related to my father, who, as my mother once said, "never met a self-help book that he didn't like" (and then apply to EVERYTHING for a month or so... yeah that last comment is me. But don't get me wrong. I love my dad).
Anyway, so I bought these books: Living Well with Autoimmune Disease by Mary J. Shomon, Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards, and (my favorite title), Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe and Joan Friedlander. Since I'm only halfway through the first one, I'll wait to tell you what I think of them, but that's what I'm reading right now. Until Confessions of a Shopaholic or the November issue of Lucky comes, that is*.
But before I did my part to keep Amazon.com in business, I read (most of) this book I found in the library at Wake Forest when I was there visiting my boyfriend, Christian. It was called The Chronic Illness Experience: Embracing the Imperfect Life by Cheri Register. While in retrospect, this book isn't exactly the attitude I want to mirror, I really appreciated the commiseration in book form. The author suggests that coming to terms with chronic illness is a bit like grieving a lost part of yourself, and that we tend to go through the stages of grief: Denial, Anger, Bargaining, Depression, Acceptance. Not necessarily in that order. So far, I've done denial (thus having left school three times instead of once... because I went back when I was still sick, you know), definitely done anger, done depression (though that's hard since it's part of my diagnosis so I'm not sure if that counts), and I think I may be both bargaining and working my way into acceptance. I hope anyways.
Anyway, the reason I bring Ms. Register's book up is that she too mentioned her problem with the simple greeting, "How are you?" and I wanted to show you her explanation because I think she really verbalized my own sometimes over-the-top annoyance with the social nicety:
The standard greeting, "How are you?" is a usually innocuous social ritual. It does not call for a recitation of horrors, but only for assurance that all is well enough for conversation to proceed. But when the answer is not, in truth, the formulaic "fine," the question becomes an awkward reminder of our culture's ambivalence about illness: Where do you draw the boundary between a collective concern for each other's health and respect for an individual's privacy? How much do others need or want to know? How much do you need or want to tell? Keeping these claims in balance is a matter of etiquette that is also fraught with emotion. Invisible chronic illness can turn this seemingly trivial greeting into a fearsome moment of decision, and there are no clear rules to follow. What a relief it would be to know that all of us, healthy and sick, had similar intentions and expectations, so that no one had to feel either affronted or embarrassed.
Nearly everyone I interviewed expressed discomfort or even annoyance with the "How are you?" greeting. In good times, conversational habits are hardly a major issue, and most of us adhere to the forms. Yet when serious illness is an immediate worry, the question can seem coldly dishonest. It tantalizes you with an opportunity to reveal your suffering, yet reminds you that physical complaints are not suitable for polite conversation. Instead of answering the question with painful truths, most of us give in to custom. There is a more pointed variant, however, that seems to call for an honest response: "How aaaaare you?" or "How are you feeling?" People who know you have been sick imbue the question with meaning by rephrasing it this way. Their concern about your health is so evident that you may even feel obliged to answer correctly: ''Both legs are numb and I've had double vision for two weeks, but now I'm starting on steroids." If these details have been weighing on
your mind, ''How are you feeling?" can be a welcome invitation to share the burden. On the other hand, it can feel like an invasion of privacy. Your illness becomes the topic of conversation whether you want it to be or not.
Choosing an answer means assessing, very quickly, your state of health and the benefits and hazards of revealing it, as well as the likely intentions of the person asking the question: Do they sincerely want to know or are they just showing concern? Few of the people I talked with had come up with satisfying answers.
The "How are you?" greeting is especially troublesome for the chronically ill because it presumes the possibility of improvement. At worst, it sounds like a test of achievement: "Haven't you managed to shake this thing yet?" At best, its frequent reiteration
shows how difficult it is for people to understand chronicity, that this illness will never be over but is, in fact, a constant feature of your life. To let her acquaintances know how tiresome the question was getting during one long flare-up, Gloria Murphy wore a T-shirt that said, "Just fine, thanks." Delores Garlid has a quick but firm way of responding to people who do not understand the nature of multiple sclerosis. It draws an important distinction between her physical health and her general state of being:
Before they knew about the disablement, they never asked, "Well, how are you today?" I kind of bite my tongue. These aren't people that I am around socially. I don't spend the time with them that it would take to sit down and explain. So I try to be honest with them. "The disability is the same as it was yesterday, but I'm fine, thank you."
Advice for loved ones:
If acquaintances, who are governed by etiquette, are to become friends, who are motivated by empathy, then they need to internalize the basic rules of behavior toward people who are chronically ill: Respect the right to privacy, without turning it into a stigmatizing isolation. Allow opportunities for candor without imposing an obligation to tell all. Acknowledge suffering where you see it, without the delusion that you can ease it. Affirm the right to take responsibility, even if you disagree with the choices made. Realize that the goal of your involvement is to help restore a sense of normalcy, which sometimes means ignoring the illness altogether. Often the most welcome help is diversion: an absorbing book or audiotape, a scenic drive, or a lively conversation about anything but illness.
Anyway, that's all I've got for today, except to I guess tell you how I am (haha, get it, because of the questi-... ok yeah I'm done). I feel fluish lately, I'm sleeping too much and I feel like a narcopleptic during the day. Today on my way home I really thought, I should NOT be driving like this. I was just so sleepy and dizzy. Also, my head hurts, and my hand joints, feeling ignored I'm sure, have decided to speak up and complain too. Metaphorically, I mean. They don't like literally make noise, like creaking or anything. That'd be weird.
I hope you all are doing better than I am, and thanks for committing to the reading. :) I'm going to try to sleep now!
*For the record, I used to read real books. I swear. I was an English major. But I'm in a real-book-reading slump. I have an Ayn Rand book under my bed that I used to squish a spider a month ago and still haven't retrieved. I also just remembered that the loaner of said Ayn Rand book reads this blog so I think I will dive under there and fish that out now...