"when thumbs up is no comfort"

 

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 more richly ambiguous metaphor of a journey: its byways, crossroads, u-turns, it's changing destinations; its absence of win, lose or fail."

I couldn't agree more. 

Comments

[B]

I was diagnosed with type 1 diabetes a few years ago in my mid-20s. When I told my boss at work why I had been taking time off to go to the doctor so frequently lately (which she was none too pleased about), she said "Oh, good, from the serious look on your face I thought you were going to tell me you had cancer!" as if we should all be relieved it was "just" diabetes. What's the deal with comparing it to cancer all the time? In any case, I almost believed her, but now I know it is anything but "just diabetes".

[Scott K. Johnson]

Very interesting article and post. I think there are some very valid points that I haven't considered before.

I do very much like the journey metaphor - it captures a lot of what living with diabetes is all about.

[saramy]

I have long disagreed with the war concept when faced with critical serious disease. But fighting and war means control and we Americans hate anything we can't be in charge of, in control of, blah blah blah. I like the idea of NOT having to be chipper and cheerful when faced with adversity (within reason) because that behavior doesn't fully acknoweldge the whole being. But complex reaction has the great potential to frighten people away. Even though one might say, who needs easily frightened friends? well, these are often otherwise good people who are frightened of their own vulnerability which are reflected to them by our fall from perfect health. I was NEVER allowed to feel sorry for myself or feel less than "blessed" after I was diagnosed, 44 years ago when I was ten. Now I understand I had to be cheerful for mother and father, not for myself. Anytime I felt sorry for myself I would be told, not kindly and in no uncertain terms, how much worse it could be (in my case, worse would be crippled from polio like the girl next door). And I am disgusted that parents (or anyone else for that matter) would, instead of acknowledging difficulty, would try and put a guilt trip on a child when they weren't GRATEFUL not to have it worse or to recognize the "blessing" of one's situation - oh pollyannA SING for us please! But that's their failing and I would like to be open to compassion! My pattern of being stoic is so tightly driven into my system that very few have any idea what a struggle it is to live with the unrelenting nature of this disease, its arbitary nature and cruel blows. But some notice and I'm pleasantly surprised by those gentle and connected souls. I've perfected the model for being a "good diabetic", which, maybe I am, but what it really means is I don't complain. I do not admit my vulnerability or fears because I'm fairly certain I will be abandoned as a burden, and, after witnessing others who are sick, I know people do run out of their own discomfort. I like to think I'm reasonably well adjusted, but I harbor discontent and fear. Is it over reaction or appropriate reaction to reality? I am, for sure, eternally grateful for blogs such as this one that shed light on different ways to be. I take great refuge in these blogs where real things of consideration are discussed and grand perspectives are presented. It is the only place I'm not alone and it is liberating. THANK YOU!