Mirror, Mirror

April 18, 2012 at 1:35 pm (Uncategorized)

“You look good,” said the acquaintance I ran into when I was out last week. It was one of the few times in many days that I was able to venture more than a few feet from my bed. I wasn’t feeling very well, though.

My guess is that people read my blog and know that I’ve been having a tough time lately. They read about my monthly chemo treatments and my recent flare-up of neurological problems. They probably have a mental picture of what someone looks like when they are living through chemo and blind spells. And apparently, I’m not it. I probably look better than expected. I’ve been told many times in the past weeks that I look healthy, well, or good.

To be honest, it’s hard to hear how good I’m looking. I know that people offer this comment with the best of intentions. But on days when I am not feeling good, this off-handed compliment almost feels like a slap. It’s as if there’s an unspoken second part to “You look good,” when it is uttered by people who know about my struggles with sarcoidosis. I can almost hear it. “So why aren’t you well?” Maybe that’s not what they mean. Maybe that’s just the question I ask myself, over and over and over. But it can be awfully hard to separate the two.

Let’s be clear, though – I like getting compliments. I don’t think I’d take it all that well if people were coming up to me and saying “Wow, Rebecca, you really look like shit.” And I worry that in writing this, you will think I am either insane or incredibly touchy. But, as anyone in Chronic Town knows, the discrepancy between how we look and how we feel is a complicated one. Most chronic illnesses don’t leave the physical markers we’ve come to associate with disease. Cancer and AIDS are probably the illnesses that get portrayed the most in popular culture. Close your eyes and see what images come to you with the word “illness.” I’m betting you conjured up someone bald from chemo, or someone very frail, reduced to skin and bones, maybe pale and sallow.

Before I sat down to write this, I spent a few minutes staring in the bathroom mirror. Compared to Emma Thompson in Wit or Susan Sarandon in Stepmom or Tom Hanks in the later scenes of Philadelphia, I am virtually the picture of health. Gauntness certainly isn’t something I need to worry about. Eight long years on varying doses of prednisone have left my face full and fleshy. In the past few months, I’ve had to increase my daily dose to over 60 mg. and get several intravenous infusions of prednisone. The higher dose has caused my face to flush. At a casual glance, I probably look like I’ve got a healthy glow. My hair isn’t looking too sick either. The chemotherapy I get every month doesn’t cause hair loss. Like millions of lymphoma patients who take the same medication, I’ve got a full head of hair.

Since I don’t get to leave the house too often these days, I also take care of my appearance when I do. I lost most of my brows during my first chemo regimen, so I carefully pencil in fake ones using my few remaining natural hairs to guide me. I lather concealer on the prodigious dark bags beneath my eyes, and add a little artificial color to my cheeks if my prednisone flush isn’t blooming.

It’s the disjunction between how I look and how I feel that makes “you look good” such a complicated compliment. People who know me well—and care to give me more than a glance—know to look below the rosy cheeks, fat face, and make-up. Jay says that when I’m not feeling well, I get a pallor that cuts through the prednisone and the blusher. My local doctor reads my pain in my eyes, and in how I hunch my neck. And in that disjunction, there is room for all kinds of mischief.

As Susan Sontag so brilliantly made clear, first in Illness as a Metaphor and then in AIDS as a Metaphor, sickness gets a hefty load of cultural baggage dumped on it. Sontag argued, sometimes acerbically, sometimes passionately, that we need to strip away the metaphors we heap onto illness. Sontag—who was undergoing treatment for breast cancer when she wrote Illness as a Metaphor—urged us to relinquish the metaphors and the myths surrounding sickness: that people get what they deserve, or that it’s part of some divine plan, or that there are “good” diseases and “bad” diseases, or that we should never talk about the sick, or that we should always talk about the sick, and on and on and on. In the end, the weight of all our cultural preconceptions about why some people get sick and what sickness (and treatment) look like make it harder simply to be sick. And it’s hard enough already.

There are a lot of us with chronic illnesses moving, undetected, through the world. We don’t have signs hung around our neck. Those of us with sarcoidosis, multiple sclerosis, lupus, rheumatoid arthritis, Crohn’s disease—and a host of other debilitating illnesses that are little understood—usually keep our hair. There are an estimated 50 million of us in the United States, trying for normal lives in spite of illness, in spite of unrelenting exhaustion, in spite of debilitating treatments, in spite of pain. And the crazy thing is that we can (and often do) look pretty good.

So what do I say when a well-intentioned acquaintance tells me optimistically, on a day when I’ve searing head pain or have just fended off a spell of god-awful vertigo, that I look good? What can I say? It is beyond the limits of polite conversation to say that, actually, I am really not good at all. I am rather crappy. And I’ve got to assume that when someone says this to me—and they are someone who knows about my 8-year battle with sarcoidosis—they are intending to lift me up with a compliment rather than make me feel a little crazy. I must assume their innocuous nice comment isn’t emerging from metaphors about illness or cultural assumptions about what “real” illness looks like. I’ve got to choose the light, rather than the dark. I’ve got to assume that this is fraught because of my issues—not theirs. This is a small thing. This is about me. This is not a big deal.

What do I say when someone tells me that I look good?

I say, “Thank you.”

What else is there to say?

What came to you when you closed your eyes and said the word “illness” to yourself? Do you ever get comments that are hard or complicated to hear?

14 Comments

  1. Martha said,

    I hope I don’t make you crazy this way–because In know I often say “you look good”–and I always mean it as a compliment. It is never an attempt to minimize the pain I know you are in. But it is to recognize the effort you make and because to me you do (almost always) look really beautiful–love shines through, I guess.

    • Rebecca Stanfel said,

      No, No!! Not you! I was thinking about people who DON’T know me, who see me only every now and then…And, anyway, as I tried to make clear in this essay, the craziness comes from me. Your comment made me cry because it was so kind and beautiful. I know that everyone is just trying to be nice. I know that. It’s just complicated. That’s what I was getting at. But, no, I wasn’t thinking of your kindness at all when I wrote this.

      much love,
      rebecca

  2. livrancourt said,

    Rebecca – Nice job articulating a complicated issue. I hope today is going well for you.

  3. Elaine Smothers said,

    It’s always good to see you back & blogging, Rebecca! As someone with chronic health issues, I can so relate to your posts which are ALWAYS on target! Keep on fighting the good fight and hang in there! You inspire me!

    • Rebecca Stanfel said,

      Thanks, Elaine,

      I’m glad my writing resonates with you. I’m not feeling particularly inspirational these days 🙂 But it means a lot to know that what I’m saying rings true.

      Thanks for reading and taking the time to comment.

      Take care,
      Rebecca

  4. Allyson said,

    It seems like so many well-intentioned people are also unable to make any comments that are not aesthetic. Of course we do live in a culture obsessed by youth and attractiveness, so I guess I shouldn’t be surprised. Years ago I had a friend who always greeted me with something like, “you look great! You’ve lost weight!” This confused me and it took me a while to realize her words had nothing to do with my appearance but were about her own complicated feelings about weight and beauty. The best compliment I ever received was from another friend. I hadn’t seen her for months and in the interim I had started a weight lifting regimen. She looked me up and down and said, “Have you been working out? You look…redistributed.” So yes, I like getting compliments as much as the next person and no, I don’t want to hear the bald truth if I’m looking crappy. But I definitely appreciate honesty. Thanks, Becky, as always, for sharing your experience with us.

    • Rebecca Stanfel said,

      Hi Allyson,

      It’s great to hear from you. You always have such an interesting and nuanced take on things. Yes, you are absolutely right that we do live in a culture that is overly attuned to appearance. I tend to dwell in my own little “suburb” of chronic illness and thinking about how others’ conceptions of illness play out in how they respond to seeing someone sick. But you’re absolutely right. This is much bigger. A lot of us do a kind of somatization, like your friend always telling you that you looked like you’d lost weight. Sometimes when we respond to someone’s appearance–positively or negatively–we are taking emotions, metaphors, or ideas and putting them into the physical realm. I guess this is a problem when there’s judgment–you look fat, or bad. Of course, a large part of what I was writing about are my own internal demons–if I look healthy then why aren’t I feeling (and acting) healthy?

      I really appreciate you taking the time to read and make such insightful comments.

      love,
      Rebecca

  5. Basil Rene said,

    I fully feel your plight of the disjoint between the looking well and feeling like crap. The thing I always say to myself is that those who really do care and are in touch with their empathic side are able to see the pain, the agony, the feeling of frustration, the hurt in eyes. Not to say those that do not are not sympathetic, but those that do will know your plight. So when you get the “you look well (are you really Ill)..” type of comments, don’t take them to heart or feel distraught of the underlying meaning of the comment. You know your truth and that is all that matters. Keep your head up high and look at that bloated, flushed, dark circled, eye brow less ace and know that you are a super strong person, going through your own personal hell that the majority of nay Sayers can never live through one day of. Keep up the positivity, hope and faith that this all would pass. There has got to e a light Arthur end of the tunnel, even if it may be a dim one.

    • Basil Rene said,

      That should have read “at the end of the tunnel, not “Arthur”. Crazy iPhone auto correct!! 🙂

  6. Rayna said,

    After posting a picture of Dov making hamantaschen from the past 3 years, I had a friend comment, “Your hamantaschen look better and better each year.”  What is that supposed to mean?  Talk about a back-handed compliment! 

    But, I can only think that someone would say that you look good because you really do look good!  Your adventures in China along with all everything else have left you exhausted, but you still make the effort to get up, get dressed, and get out of the house.  If you didn’t look good I don’t think the person would have said anything at all.  He may have said “how are you feeling?” with that pathetic look of feeling sorry for you. Oh, how I hate that look.

    Glad you’re back to writing–I’ve missed you.

  7. Barbara Barnes said,

    This makes me think of the “non-violent communication” or “inner disarmourment” that I study. For a solid two weeks, we were instructed to not offer compliments… because they can pose a barrier as they are a judgement.. and if I can say you look good, I can also say you look bad. Instead we were urged to share observations. Like, “I am so grateful just to lay my eyes on you, what a gift that is today” or “I am really celebrating that you are out and about today.. is it a big, or huge effort to be here?” Etc… it really changes the way I look at off hand comments.

    And when I close my eyes and hear “illness”, what comes is a string of cuss words my Dad used to say followed by mercy. And yes, recently, within hours of Taco dying, someone at the barn urged me to “have a nice night anyway” … and I just walked away, stung on their behalf at the distance they were living from their soul. Love you… and perhaps a Billy Crystal quote, because just being alive makes “you look Mahvalous, simply MAHvalus darling… “

  8. Randy Bekkedahl said,

    You’ve touched a raw nerve with this post. I’ve struggled with this very issue for years. Usually, when offered an off hand comment like “you look good today.” And I feel crappy, I will be honest and say “if only I felt as good.” or something like that.

    I also have developed a “code” that my close friends understand. When they see me,they ask how I’m feeling, and if I say “just dandy” they know I’m having a rough day and I don’t have to go into details with them. They understand.

    Good to see you blogging again Rebecca. Hang in there.

  9. Nancy said,

    I have a code with my sisters – “Super” – they know it’s been a struggle of a day , boring, the same ol’, same ol’, thank you for caring. I think that ” you look good” or “Gosh. You don’t look sick” is a safe way for people to let you know they are aware you are dealing with something. Most don’t get it, heck, there are many times I don’t get this disease. So glad you took a walk with your men. n

  10. Marianne said,

    Lately, I’ve been tellin people what I want them to say upon meeting me. I decided to bleach my teeth (I have connections) and told 2 people the next time they saw me, they were to tell me “my what bright teeth you have.” It didn’t matter that I told them to say that – I enjoyed hearing it. So anytime you want a specific compliment, let me know!

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