But You Look so Good

Anyone living with a chronic illness, actually, any individual with a physical problem, smiles a bit ruefully at those words.  The statement is benign and well intended.  It is a straightforward sentiment, simple in its sound, complicated only in the subtext.  The confusion is, to whom are the individuals offering that friendly observation?  The answer: to themselves.

We are a nation uncomfortable with illness and disability. We do not want to see, we really don’t want to know.   Popular culture celebrates beauty and physical perfection.  Just pick up any of our most popular magazines or turn on the television after dinner.  And don’t forget to buy People:  America’s Hundred Most Beautiful Women.  Meredith was in that issue a few times.  I was tempted to change the locks on all the doors.

When someone says, But You Look so Good, what he or she really means is, well, you look okay.  You must be getting better.  You must be okay.  We cannot handle sickness.  We don’t want you just to regain your health.  We need you to.  We are only reassuring ourselves with that simple sentiment.

This is part of the reason so many of us who know serious sickness feel like second-class citizens.  Face it.  The chronically healthy around us cannot handle seeing our imperfections.  Neighbors and colleagues do not want to be mean.  There is nothing malicious about their feelings.  It’s just whom we are as a society, reinforced by the values we see in advertising and the popular press.

The problem is people in power do not want to hire us.  They cannot afford the perceived risk.  And who can be bothered?  The social marketplace can prove equally harsh.  Who wants to date a cripple?  Choices are not hit head on or expressed openly.  There are always a hundred explanations that do the job.

When I was doing research for Strong at the Broken Places, I came across a web site with the bold title, But You Look so Good.  The content focused on issues about living with chronic illness.  There was a biter tinge to what I read there.

24 Responses to But You Look so Good

  1. spiro spyratos February 5, 2014 at 4:09 pm #

    Right on Richard. I have foot drop which is not bad and slightly weaker left leg and as a result, a very subtle walking discrepancy (euphemism for “limp”). Like you, I was always a runner but now focus on what I can do: bike 20-30 miles and swim. Focus on the ability, not the disability, but I agree with a lot of what you said in this post. After divorce, I have found it very difficult to date to the point where I just don’t care. I have been self-conscious about the walk and find myself avoiding social situations. It’s almost as if I’m happier being alone. I’ve used the “injury” excuse but people can’t look past it. Forget mentioned MS. I am doing what I can in the meantime to remain healthy and hope the stem cell trial pans out for all of us.

    • Richard M. Cohen February 5, 2014 at 4:29 pm #

      Spiro-

      And maybe there is someone out there who sees a man, not a limp.Don’t give up. Who cares if you walk a litle funny. Not the end of the world.

      Best,
      R.

  2. Joanne February 5, 2014 at 5:02 pm #

    Hi Richard,

    I have MS also. I am interested in your stem cell treatment and enjoy following your blog.
    There are many things you say where I can relate and I will have my husband read some of your clauses to help him understand a little better why I react to situations… the way I do.
    People tell me they don’t understand why am so happy and optimistic.
    I’ve noticed that most people that have a chronic disease are happy people. When you have no choice you must deal therefore you appreciate many small things that others take for granted creating a happier person.
    I was diagnosed 13 and years ago at the age of 44 and my life has changed many times since then as parts of me are being taken away I simply adapt and find a new route.
    I had amazing eyes and talented hands as you can see on my website. All that has been taken away from me but I’ve moved on in other creative directions and will continue to change as the need arises.
    Richard, best of luck, I hope with all my heart that your stem cell treatment is a success not only for you but for the rest of us in the MS world.
    Happy Joanne

    • Richard M. Cohen February 5, 2014 at 8:22 pm #

      J-

      Stay happy. Our day will come.

      Best,
      R.

  3. Janet February 5, 2014 at 5:47 pm #

    Hi Richard,

    when I hear that phrase (and i hear it quite often) i just look up from my wheelchair and smile my biggest smile i can muster. I know in my head that the majority (if not all) of the people I encounter can not, will not, be able to understand what we MSers go through daily, minute by minute.

    I am following closely with high hopes your journey with stem cell treatment. I wish for you and your family a wonderful day!

    Janet

    • Richard M. Cohen February 5, 2014 at 8:24 pm #

      Janet-

      Your day will come.

      Best,
      R.

  4. Terri Weiss February 6, 2014 at 5:23 am #

    Hi Richard,

    Lately, I’ve started initiating the comment by starting off with, ‘Wow, you look great!’

    That eliminates the ‘but’ when the response comes: The reciprocal, “You look great, too!’ I mean, what else can they say, right?

    Little does the person know the quagmire I just let him or her avoid.

  5. Geof February 6, 2014 at 8:35 am #

    We are a country whose culture follows a general Christian theme of ignoring both ends of life. We are uncomfortable with topics of sex or death, and only face them when people like Kevorkian force us to do so. We have broad agreements on many of the issues around the subjects, but we are uncomfortable enough about the subjects to never come out and discuss them as a society.

    To confront disability is to confront our mortality. We prefer to live in denial than say, or for that matter hear, “you don’t look as mortal as I thought you would with your disease.” When I hear people say “but you look so good,” I just think it says more about their expectations than my looks. Then I can smile to myself knowing I beat another person’s expectations. Some day I hope to beat mine.

    • Richard February 6, 2014 at 4:36 pm #

      How about, Wow. You’re not dead?

      R.

  6. David February 6, 2014 at 10:39 am #

    Richard,

    I think most people , including doctors can be uncomfortable around the chronically ill and handicapped for a fairly good reason.

    I think most people we interact with want us to be better. The doctors want our MS to go away but they cant make it happen because there is no cure yet.

    They are frustrated or uncomfortable and our optimism at least can give them some comfort.

    Having a sense of humor can only help. I told my wife years ago when my symptoms curtailed my walking , I will probably never dance again. The tears were welling up inside me but Mary said, David let me tell you, you never could dance.

    Instead of tears , we both laughed.

    Another time as I faced more and more disabilities she said, wouldn’t it be great to just feel like shit again.

    Again laughter was the placebo of the day.

    We borrow hope and give it away

    I give it to all who meet here!

    David

    • Richard February 6, 2014 at 4:40 pm #

      You are right about laughter. What Meredith and I say to each other can be so politically incorrect, others would call it sick. We think it’s funny. Go figure.

      R.

  7. Christopher February 6, 2014 at 5:30 pm #

    Good day sir.

    Thank you for posting your thoughts here about living with a disability. Even though posting personal perspectives is de rigueur these days… it takes a lot of courage to be private in public without putting up too many walls. Your observations are quite good and you intuit well. I understand the difficulties of navigating a world that never seems to really understand people, for all the people who inhabit a collective community. It seems that the public at large, with very few exceptions, views people with disabilities as either a curiosity, a hindrance or human detritus–as if most people with disabilities are just unmotivated malingerers. I really wish that education was something that could fix this, but I don’t think human beings are quite there yet developmentally. It is a very weird situation to go from being able-bodied and somewhat invisible to being disabled and suddenly unable to move seamlessly through space and time without being completely conspicuous. It’s kind of like moving through a crowded mall chained to a neon elephant that won’t stop trumpeting. There is no make-up that can cover it up when going out to dinner and a movie, and no hat and sunglasses to hide behind when going to buy milk. I also wish I could believe that people all just really feel empathy for me and want me to be better, but the world doesn’t work that way and humans are wholly imperfect. More accurately, friend or not, people wish I was out of sight or out of the way so they can go on without the awkwardness that comes from average self-centeredness. I wouldn’t say that people are basically selfish or ignorant; they just don’t like to be reminded that life is messy. I think many able-bodied people would be surprised how much disabled people account for them when going through life. Just like them I want to fit in. It’s just nearly impossible when their minds are being bombarded with unrealistic images of how life ‘should’ be. And mine gets twisted along the same measure, as I start believing that I don’t belong.

    • Laurie February 6, 2014 at 5:54 pm #

      Richard,

      Thank you. I read one reply is “And you look intelligent, go figure.” Normal is over rated.

    • Richard February 6, 2014 at 7:33 pm #

      You have summed it up. People are not malevolent. They are limited by the blinders they put on themselves. Who should we feel sorry for? Them or us?

      R.

    • Richard February 7, 2014 at 8:45 am #

      We all want to fit in, to be seen as a regular person. What we are up against is a little Dickensian.

      R.

  8. Christopher February 7, 2014 at 6:38 pm #

    Dickensian… yes. And a little Pink Floyd.

    My brother and I get into trouble in public for our very intentional flouting of political correctness. For us it’s a way of minimizing the pain of being related and unable to change the course of my disorder. It also, mistakenly many times, presupposes others would get that the joke is to relieve tension and awkwardness by creating artificial awkwardness that is obliquely inappropriate. In a way, it slows people down to try to get them to think a bit; like the riddle that ends with, “what do you put in a toaster?” Most people inevitably reply, “toast!” If they were to slow down they would be able to process that the correct answer is actually “Barbie’s head.”

    • Richard February 8, 2014 at 4:53 am #

      I understand where you are coming from. How are you going to fit Barbie’s head in the toaster?

      • Christopher February 8, 2014 at 5:03 pm #

        You know… I’ve often wondered that myself. Smarter people than I tell me the correct answer is actually “bread.” But really ridiculous things make me laugh so hard that nothing else matters. It’s an interesting sight, seeing a grown person chortling away in an office cubicle seemingly at nothing. I’ve been asked to “keep it down” because it disturbs the misanthropes–and they do the best work as litigators.

  9. Mimi February 8, 2014 at 1:37 pm #

    I hung on to walking for as long as possible. Probably longer than possible considering the amount of falls I took. Prior to the struggles, I used to hear, “But you look so good,” too. Then came the cane, then the walker, and now the scooter.

    The first glance at me usually went like this: eye-contact, then eyes on scooter, then pitiful eye-contact. I still look good, so I decided to switch to wearing slightly lower cut necklines. Now the glance is: eye-contact, chest, scooter, chest, eye- contact. By the time he/she gets to the last eye contact, men think, “What scooter?” And women think, “What a bitch.” Haha!

    Whatever gets me through the day. 😉

    • Terri Weiss February 8, 2014 at 4:09 pm #

      At least you get eye contact, Mimi!

      I find that being in a wheelchair usually makes me unworthy of it: People turn away, pretending not to see me, or they stare over my head and address my husband — as If the wheelchair means I’m incapable of understanding and speaking.

      Alternatively, like Christopher said, I turn into the conspicuous neon elephant when I enter a crowded space and need a ramp, or room to maneuver, when all I want is to be part of the scene (without feeling like I’m making one).

      And then I’m ‘the woman in the wheelchair,’ defined by the equipment, instead of by who I am.

      I guess I long for the days when all I had was a foot drop and a cane, and people still told me ‘but you look so good…’

      • Richard February 8, 2014 at 4:41 pm #

        T-

        When I am in a wheelchair, at an airport or having to move a great distance, people ask Meredith if I want a drink or a bathroom. It is as if I no longer can speak. When I walked into a house of worship, leaning heavily on a cane, an usher just stared. When Meredith appeared after parking the car, the usher asked her where I wanted to sit. I am learning to talk, I told her. May I try to answer?
        Always know this is a reflection on them.

  10. Amy Corcoran-Hunt February 9, 2014 at 10:20 am #

    The presumption that there is no use talking to me, that whoever I’m with is my keeper, is something I try to think of as funny. I have decided to help those people think differently with a red wheelchair. Will know in a month or so if it works.

  11. Mark February 11, 2014 at 9:10 pm #

    Maybe it is me. But I will take the compliment. Can’t imagine having a limp, dealing with balance issues, managing fatigue and having to deal with….”gosh you look terrible. Are you feeling okay?”

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