Who hates to hear they look great?

(Originally posted July 2007 at three rivers fog)

Over half of the chronically ill*:

In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”

“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”


This is a sore spot for many with “invisible” conditions: that is, disabilities or impairments that aren’t visible to the eye, that don’t cause outward physical deformities or leave other telltale signs. The icon of the disabled in our society is a stick figure in a wheelchair; many healthy folks don’t realize that a good many of the people milling around them, though appearing outwardly healthy, can be suffering a chronic illness that leaves them impaired or outright disabled.

These illnesses can range from diabetes to chronic fatigue syndrome to cancer to eating disorders.

And because they are invisible, they can be harder to understand. People can’t see what’s wrong with you, so they assume there isn’t anything wrong (and we’re back to that white male able-bodied heterosexual default “person” again). Even presented with evidence, many people still insist that there can’t be anything really wrong. As people who have battled depression surely find familiar, you’re expected to just get out and get some sun, go out with friends, or otherwise push through. Most of us, after all, have experienced periods of sadness, pain or fatigue, or times when we were excessively hard on ourselves over our physical appearance—and healthy people will be able to recover from these things and move on. They have little concept of living with these things every minute of every day for the rest of your life.

And of course, no one can be expected to fully understand. But there are certainly conversational landmines that even the most well-meaning and sympathetic person can inadvertently step on. “You look great!” is one of them. Naturally, everyone loves a compliment (although many, especially women, are trained to feel a need to debate or deny those comments so as not to seem unduly self-confident). But when these compliments are offered as a refutation to a person’s complaints that they are feeling down or tired or overwhelmed, it leaves a person feeling (recall that teenage angst) that they aren’t really understood.

I’ll grant that I don’t tend to mind these comments as much; they blow over me a bit more easily. But a couple more comments that the committee picked out tend to dig under my skin:

* “If you stopped thinking about it and went back to work…” (12.42%)


I’ve been told to “think positive” my way out of the pain countless times. I have news for these people. I thought-positived my way through my entire first nineteen years of life. Despite living with a pain processing disorder that can make carrying in a few grocery bags feel like running a marathon, I pushed my way through school on nothing but Tylenol. And then I very nearly failed out of high school because I overworked myself. I was out of school for so long that the attendance office started calling and leaving threatening messages that I needed to come back or… I would go back to school for half a day and then take off my three-days-without-a-doctor’s-note just recovering from those three and a half hours sitting in a chair, not even enough mental energy left to learn: just enough to be present.

I then pushed myself through college, thinking that if I could just keep at it I could be “normal.” After six weeks I had to drop all my classes; I was stuck in bed in too much pain to so much as microwave myself a Hot Pocket for lunch; I lived on a big pan of bread bedside until I was able to go back home. I was bedridden and then housebound for three months thereafter.

I learned to pace myself after that; I dropped down to twelve units when I was able to return to college, and then mid-semester had to drop half those just to be able to finish half my work in the remaining half. (One prof cut me slack and gave me an A based on the work that I did, the other didn’t and gave me a C- because though I did good work, I didn’t do enough work to earn the grade. I still can’t decide which approach affords me more dignity.) Then I dropped down to six units the next semester and wasn’t able to finish it out. The pain catches up to me.

Then, a year later, I started working. Ten hours a week. And after six months I had to quit. It was killing me. I couldn’t walk when I woke in the morning; it felt like daggers shooting through the floor into my feet with the slightest of weight. I was feeling the migraines coming back, and my painkiller use was shooting upward at a rate I was decidedly not comfortable with. And my bosses were jerks to boot (“I’m fifty years old, honey, I hurt too.” “…!!!! [splutter]”).

No. I can’t be normal. Even if I look like any other perfectly healthy twenty-one-year-old (albeit with somewhat darker circles under her somewhat baggier eyes). I have to pace myself. I can’t take any more than two showers a week (and showers-per-week is a good gauge of my health at the time; when it drops below one, I know I’m in trouble). I can’t get out of the house too much (the effort trying to make myself look half-presentable, even after I ditched the somewhat exacting patriarchy standards, is too much, and then I’m out of my comfort zone where I can sit, stand, lie how I need, when I need and where I need, have my medicine and a drink at hand and heating pads and pillows ever-ready). I can’t take on too many out-of-house commitments, if any, and it has to be a pretty flexible definition of “commitment” to boot. My husband works full time and I not at all, and he still does half the housework. I’ve learned to ask for help when I’m struggling instead of stubbornly insisting I can do it myself. Etc. I’ve had to accept all these things. It’s a heavy hit to your pride, trust me.

Which reminds me of the last one that bugs the shit out of me:

3. You’re so lucky to get to stay in bed all day.

Oh, honey. I’d give anything to trade you…

*(A side note: I find it frustrating that a good chunk of stories I receive on fibromyalgia are press releases, seeking to advertise a new “alternative” treatment or, in some other way, make money off those suffering. A good chunk of the rest is business stories talking about how a condition impacts corporate profits. The remainder are slice-of-life stories that often get the facts pathetically wrong. I’d say perhaps one out of every thirty or forty stories that come my way seem to approach the condition in a respectful and accurate tone. This, despite being a press release, was one of them.)


  1. “You’re so lucky to get to stay in bed all day.”

    This makes me want to smash plates. And maybe casserole dishes.

  2. Oh my. That certainly explains why I felt oddly happy to have an ulcer on my lip, and why I hear my family’s cheerful attempts at “You look well today” type encouragement as “So why aren’t you back at work? Or if your job’s so hard, why not get an easier one?”

    People also seem to miss the point that they will *only* see you on your good days, so they get a statistically skewed perception of how functional you are.

    Can I also throw in a hate vote for “What did you do today?”?

  3. I feel you. I have a progressive muscle pain and weakness disability but no diagnosis. I *can* walk 50 yards, but only with agonizing pain, then terrible soreness, profound fatigue and weakness the next day. Going grocery shopping even with a scooter cart is like running a marathon – it knocks me out the whole next day. So I get frustrated when fellow students remark “Oh, you’re walking today, that’s great!” No, asshole, it’s NOT fucking great. It’s horrible, but my scooter battery ran out. Holding my tongue might be the worst challenge I face on a regular basis.

    And can I just talk about the evil eye that’s cast upon me because I’m Disabled While Fat? You’d think a fat person using a scooter is a federal crime.

  4. “Can I also throw in a hate vote for “What did you do today?”?”

    Only if I can add one for the pointed “And what are you doing with your life at the moment?”

    “And can I just talk about the evil eye that’s cast upon me because I’m Disabled While Fat? You’d think a fat person using a scooter is a federal crime.”

    Oh, you can talk about this at length, please! This is the one thing (along with the usual detritus of internalised ableism) that put me off getting a scooter for so long. The scooter that has made my life a gazillion times more doable. *hugs Smaug*

  5. Great Post.

    One of my friends, who knows a bit about my mental state, has a habit of saying – ‘you look good today!’ Or, ‘you’re looking better, healthier, thinner!’

    Among other things I have a near crippling eating disorder, so how he thinks telling me i look thinner is in any way a helpful statement is beyond me.

    I hate it. I know he means well, but in reality it’s just selfish – he doesn’t want to deal with me being depressed or crazy, so he says ‘you look better!’ to distance himself from it.

    And what am I supposed to say?
    ‘Actually I’m one step above cowering in a corner today so I’m out having a crack at enjoying myself?’
    And what am I supposed to do? Not try to look, feel and act better? Isn’t that what you want me to do? Isn’t that the answer to all my problems? Am I supposed to cry and scream at all times like I feel like doing, do you not want me to wear my mask/ I thought you didn’t want to deal with this?
    .-= Z´s last blog ..Breathless =-.

  6. Fantastic post about one of my least favourite parts of my Furry Little Problem.

    Yes, you can’t see the arthritis…yet. X-rays show the deformities, but I don’t carry a pocket x-ray machine or a portable set of my films wherever I go. Although lately I’m sorely tempted to upload a few jpgs from my last scans to my iPhone to flash at people who bitch at me for taking too long to cross the traffic into the grocery.

    Yes, I have lost 50lbs. That’d be because of the chemotherapy I have to take once a week for the rest of my natural life. Being too nauseated to eat for 3 out of 7 days tends to make one drop the weight.

    Yes, my hair has more body. Once again you can thank the chemo. It has caused my formerly thick hair to thin to the point where what is left is kind of wavy. And that peaches and cream complexion comes from a facial rash that seems to be another medication side effect. That or a warning sign of a worse sort of disease than the ones I’ve got already.

    Yes, I spend all day in bed or on the couch a lot of times. And there isn’t a minute that I wouldn’t rather be in a meeting talking about cost-per-units, sales projections, catalog print deadlines and licensing contracts. Even the dreaded Model Line meeting with all my colleagues bitching about his or her products getting short shrift from the art department would be better than the fatigue, the terrible heat radiating off swollen joints and the pain. The pain…endless, stabbing, grinding noise that drowns out every other thought and emotion.

    Yes, that is a lot of fun.
    .-= Coble´s last blog ..Lipstink =-.

  7. I just want to say thank you for this. It is not often I see myself reflected and the tears of relief that I cried mean the world to me. It is so isolating and so many think that you can just push through it and that is not the case at all. I had someone comment to me this weekend how lucky I was to use a scooter. It took everything in me not to scream at the woman. I am sure she would not want to trade for even one day and yet somehow I was the lucky one. The pain with fibro is unbearable some days…there is nothing lucky or wonderful about it.
    .-= Renee´s last blog ..Zahara Jolie-Pitt Ask Your Mama To Buy A Comb =-.

  8. And what am I supposed to say?
    ‘Actually I’m one step above cowering in a corner today so I’m out having a crack at enjoying myself?’

    Yes! That’s what I always want to say. It’s so irritating to put on a façade and then get praised for it.

    (Of course, if I’m in a state to put on a façade in the first place, I’m already ahead of the game…)
    .-= Tlönista´s last blog ..Mixie Pride, One Day At a Time =-.

  9. Oh, yes, I recognise this! “You’re looking good today on days when I can barealy speak for depression. And I get the ‘And you cope with it so well’ from people who have no idea how close I’ve come to the “Mad person o nthe street corner talking to themselves”.

  10. I have Ehlers-Danlos, which is only visible if I show my “tricks.” At one appointment, my physical medicine doctor said to me “You look great today. Let me guess – you feel like hell.” I could have kissed him. He got it – if I took the extra effort to put on a nice outfit, fix my hair, do makeup, etc., chances are that I was attempting to “fake it ’til I make it.” Sometimes it helps. If I look pretty good, I’ll at least be in a better mood, and can function for a short time while out and about.

    On those rare days when I wake up feeling OK, I don’t usually bother with hair and makeup, because I don’t want to waste the time. I don’t know how long I have until something goes haywire.

    Normally I don’t mind having an invisible disability, or perhaps I should say I don’t wish it were more obvious, except when I’m on the Metro. I simply cannot stand on it. My balance is poor and because my shoulders are so loose, I cannot hold on without dislocating them. So I get the stink eye from people who think I should give up my seat.

  11. For me, the absolute worst was having a medical professional congratulate me on losing weight. He was pretty shocked when I angrily pointed out to him that I had lost a lot of weight because he had failed so miserably in his attempts to help me manage my illness. My ensuing rant about what a sexist asshole he was ended that “therapeutic” relationship pretty quickly.

  12. My dad didn’t say this to me, he said it to my mom or sister, and they naturally told me.

    I was in the hospital for 5 days, because that’s how long it took to find a freakin’ urologist who wasn’t a hack that took my insurance. I did have some fun – I was 17-about-to-be-18 on the almost empty kid’s hall, so I was doted on. I didn’t spend the whole time crying and screaming in pain.

    My dad visited (my relationship with him is similar to my illness – ups and downs. We were on speaking terms) almost every day, bringing me the paper. According to him, that was the “best I’d ever looked!” I’m doped up, in pain, in the hospital, but I look great!

    Before I went in the hospital (I went in Friday – we went to the ER and they admitted me), my hack urologist put a stent in. Wrong. So wrong it was falling out (along with everything in my kidney onto the couch while I slept!) by Friday. (Put in Wednesday.) When I woke up after the procedure, well, the pain medication didn’t work. I was writhing. He told me, “I have pain. She (the nurse) has pain. Your mom has pain. We deal with it.” (So shut up.)

    What hurts the most is my mom. She’s learning along with me, and she keeps going back and forth on what I “should” do. She’s said, “You look great!” many times. “I don’t feel great.” “Oh.”

    And she’s now on me about exercising. It HURTS. I’m sorry you’re sick of me being on the couch, being “lazy.”

    No one ever said anything insensitive when my skin was infected. I wish all my pain had external, easy to understand signs. Then I’d never doubt myself, and neither would anyone else.

  13. Ugh, I hate this so much. I’ve gotten it a lot this semester, as a bunch of my friends haven’t seen me more than once a month and always- always!- the first comment out of their mouth is “you look great!” There really just don’t realize they’re seeing me on my best of best days, not on the days when I’m curled up in my room not able to move from a combination of my pain and depression. They just don’t realize it’s all acting.

  14. I get this type of thing from my dad all the time. Fuck is it ever frustrating. Yes daddy I know most people my age are in school or out finding jobs. I know you think I’m just a lazy git lying in bed in my room on the computer all day. There’s no obvious *reason* why I can’t so much as fix something to eat most days, so obviously I’m perfectly fine. And any problem I might articulate just gets “oh I blah blah too but I suck it up and do stuff anyway”. I HATE the american meme of just pull yourself up by your bootstraps. I suppose making yourself more miserable is virtuous?

    I almost wish the birth control pills *hadn’t* helped the stabbing screaming pain every month so I’d have something that might be recognized as a valid excuse. “I can’t walk for very long without losing track of which way is up” is pretty fucking invisible.

    (Sorry, I’m extra ragey right now because I went grocery shopping with my dad earlier and he found no less than five excuses to tell me I needed to get out of my bedroom and get a job. Fuck.)

  15. I think it’s always best to give specific compliments regardless. If you have great glasses, if I love the curl in your hair, if you have a sweet smile or beautiful hands – those are better in so many ways. First, we’re conditioned to doubt compliments and believe insults, and the more specific, the harder to brush off. Second, a compliment is a judgment, though a positively intended one, and you never know how the flip side of the compliment will affect someone. I mean, even complimenting the curl in your hair – what if you hate the curl and the curl represents the shoulder pain that won’t allow you to blow dry it straight. Urg. But the more specific, the less likely to go wrong, in my experience.

  16. I have Ehlers Danlos syndrome and a million and one complications from it,and You are all correct. All i ever here is how beautiful i look, and i cant eat because of chronic nausea,
    My brain stem is elongated, tethered cord,always dizzy and it feels like i am being ripped apart, Everything dislocates.i have lost my job, the ability to legally marry, have a career or have children and i am in agonizing pain and dependent on doctors pharmacists and people who arent me for the rest of my life. I once danced, ran, and was an equestrian now it’s pretty much the sofa for me
    Ah yes this is the good life. Who would chose this? i am 33 not 98.
    My other HATED comment is “You are too young to be in pain” Sorry, i never realised there was an age requirement.

    Best of luck to all, and my true empathy for your frustration.

    p.s. LeeLee i wish i had your doctor i still cant find anyone who knows EDS in the finger lakes region of NY.

    Cheers, K