Did you see the article, when thumbs up is no comfort by Jan Hoffman in this Sunday's New York Times? What a wonderful essay about how our culture approaches illness and disease (cancer in this case), about how we generally expect people dealing with health issues to buck up and inspire us, among other things. "'Whether you're a celebrity or an ordinary person, it's obligatory, no matter how badly you're feeling about it, to display optimism publicly', said Dr. Barron Lerner." The article goes on to question this cultural norm, articulating the pressure it can put on the person dealing with the disease or chronic illness. "While many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome."
I'd go further to say that the pressure and expectation to always "keep one's chin up" can drive a person to denial or the dismissal of the magnitude of the reality of the situation at hand because, hey, at least it's not, insert "worse disease" here. Conversely, a person can come to feel that there's something fundamentally wrong with them because they can't maintain "a happy, brave face" day in and day out. I remember when I was first diagnosed with diabetes that a number of people, both friends and acquaintances, said to me that I should feel lucky because at least I didn't have cancer. On one hand I'm sure that they were trying to "look on the bright side" of what had in fact happened to me but the underlying message was so dismissive and erasing of the experience that I was actually having. I'd just been diagnosed with diabetes, a life threatening, unending, difficult disease that now meant that I'd face struggles both big and small, every single day of the rest of my life. Yes, it wasn't cancer, but still diabetes wasn't exactly a walk in the park either. For years I've struggled with the deeper pressure those comments implied, that I was supposed to feel lucky that I'd only gotten diabetes given all the diseases I could have, and as such, should put on a sunny face and get on with it.
The truth of the matter is that it's only been through not always being upbeat and cheery about having diabetes that I've actually been able to find some of the inner strength and wisdom to use this experience as fuel to a more joyful, present and authentic life. And that strength and wisdom has only become apparent to me recently, and exists only tentatively even now. The point is that this is a dimensional, emotional and physical process, one fraught with challenges and joys, two steps forward, one step back, taking on many forms and expressions along the way. For some this is a battle, for others a journey, but for everyone it is at it's core, a personal process and as such, unworthy of one, narrow cultural prescription. Again the article articulates this idea nicely, "'Metaphors don't just describe reality, they create reality", said Dr. Gary Reisfield. "You think you have to fight this war, and people expect you to fight." But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions. To describe a patient's process through illness, he prefers the morerichly ambiguous metaphor of a journey: its byways, crossroads, u-turns, it's changing destinations; its absence of win, lose or fail."