It’s not a secret that people with chronic and invisible illnesses get really tired of hearing they look good. You might think this irritation is irrational and that’s okay, because six years ago I probably would have felt the same way. I mean really, who doesn’t like to get a compliment?
But it’s not the spontaneous and genuine compliments that get to me. It’s when someone tells me I look good after hearing that I’m having a really rough time of it, as if looking good is going to make up for the fact that my body is falling apart. It’s when I’m honest about my health, only to be met with a brief but awkward silence followed by a platitude about my appearance.
Well, you look good anyway…but you don’t look sick…and various other forms of that sentiment are on every “things not to say to someone with a chronic illness” list. So it’s not a secret that we don’t like to hear it. The secret is why. I can’t speak for everyone, but I also know I’m not alone in this.
The simple answer is that just because we look good doesn’t mean we feel good.
When we feel awful and someone tells us we look good it makes us feel like our struggle is being minimized. It’s not that we’re mad people think we look good, it’s that we’re worried people won’t understand we are still sick. If someone thinks we look good we assume they think we feel good, too. So we feel invalidated.
We have a love hate relationship with the fact that our illnesses are invisible. It’s nice to be able to blend in, and it’s nice to be able to be selective about who we share it with, but sometimes it makes it harder to accept that things are different. When we look in the mirror we see the same person we always were. We see these bodies that used to dance, run, work, sing, cook, whatever, and then it’s a letdown when we remember that we can’t do those things anymore. So we feel disappointed.
Not only can we not do the things we want to do, but our bodies don’t even do all of the everyday things they are supposed to do. Digesting? My body doesn’t really do that. Standing up? Yeah, not a fan of that, either. It seems like our bodies are always letting us down. So we feel betrayed.
All around us we see all these people doing these everyday things without thinking twice while we’re just struggling to stay on our feet (figuratively, yes, but often very literally, too!). Because we didn’t understand that struggle ourselves until our own illnesses hit, we know that unless other people are touched by illness they can’t fully understand that while we look fine on the outside, on the inside we are falling apart at the seams. So we feel isolated.
And since we look fine it’s also hard for other people to comprehend our limitations. Even if they do comprehend them, not being able to see those limitations make it easy for other people to forget they exist. We often have to provide multiple explanations or reminders and then we worry about being a downer and holding other people back. So we feel guilty.
Sometimes looking good or healthy can even be an obstacle to getting proper treatment. Most of us have worried at one point or another that we don’t look sick enough to be taken seriously. So we feel defensive. All of us have had doctors question our symptoms based on our appearance, and tell us that our problems are all in our heads. All of us have been treated as hypochondriacs, and after going weeks, months or even years without answers we start to wonder ourselves if we’re just going crazy. So we feel doubtful, too.
And here’s one of the biggest things that we don’t talk about: We feel insecure.
When we become sick our body is no longer entirely our own. For one, we have a lot of doctors wanting to know about a lot of things that we’re not always comfortable talking about. And two, we lose a lot of control over how we look. We feel like we’re too skinny because we haven’t been able to eat lately. We’re unhappy with how much weight we’ve gained since starting a new medication. We don’t like how puffy our face is due to fluid retention. We’re frustrated by the acne that’s showed up because our hormones are out of balance. We’re exasperated by the dark circles under our eyes that won’t go away no matter how much we seem to sleep. We are acutely aware of all the ways that our illnesses and treatments have altered our appearance and when someone tells us we look good it’s easy to start thinking about all the ways in which we don’t. It’s hard to feel comfortable in our own skin when it doesn’t feel like our own skin. So we feel self-conscious.
We know that when you tell us we look good it’s because you’re trying to be supportive, or you don’t know what to say but you want to be encouraging, or maybe you really do think we look good and you want to make us feel good about ourselves. And we know that it seems silly for us to resent a compliment so much.
But it’s more than just irrational irritation. Invalidation, disappointment, betrayal, isolation, guilt, defensiveness, doubt and insecurity. All of that is tied up in our appearance.
So thank you for trying to be supportive, but if we open up to you about how we feel please don’t default to how we look. Listen and try to understand. Acknowledge the things you can’t see, the inside stuff. The resilience, the patience, the determination and the hope.
Encourage us from the inside out, because at the end of the day, appearance aside, that is what keeps us going.
Finding my Miracle 
So I’m here really because for some odd reason I can’t directly comment on the version of this post on The Mighty, where I came across this article from so I thought heck, I’ll click through to the article and comment there then – – –
#butyoudontlooksick – Christine Miserando’s Spoon Theory! I love it hahaha I get kind of excited whenever I see allusions to it online … but it’s all in my head, thus far have never found rhe courage to use these in verbal explanation aloud, haha 😳
“We maybe feel like we’re too skinny because we haven’t been able to eat lately. Or we’re unhappy with how much weight we’ve gained since starting a new medication.”
Yup abso-fricking-lutely! Not one with a gastro-illness but I’ve had anxiety issues for a fair while now and oh mannnn starting meds for that (while a mental & emotional lifesaver) was absolute hell 😦
The first one I got wrecked my appetite so, so bad I struggled to eat half a pot of mini yoghurt (all the while my well-intentioned-but-clueless mother kept insisting that a week later, I’d be able to make it for family lunch cos I’d have adapted by then. Well yes that is a distinct possibility but for the moment please help me by acknowledging that finishing this yoghurt is a proud moment bcos at least I am eating something … given that my insides feel like a wrung towel, pulled taut.)
Then came the next one (which I managed to convince my doc to switch me off, when I changed docs. Haha I think she was abit like #what #seriously? but I didn’t care) – anyone who’s taken Mirtazipine/Remeron will understand .. ohman gaining 7kgs in 3 months felt so disgusting cos it felt like half my wardrobe didn’t fit. & like just getting a whiff of food made me .. inflate lol.
But I digress! Point is, when I switched off that horror-from-hell (withdrawal was equal hell, I truly think Remeron/Mirt is spawn of the devil hahaha), the weight melted off and one day in school at the beginning of the school year (I teach) a colleague I hold only at acquaintance level(!) asked me if the class was a difficult bunch this year cos I looked like I lost weight.
Obviously intended as a compliment (I would like to believe) but – – –
1. There’s so much abt me you don’t know, eg the layers of reasoning behind that weight gain
2. WHAT WAS I BEFORE THIS? FAT? OBESE? HOW DID I LOOK BEFORE THIS OHMYGOSH.
3. Nope. It’s not the kids, never the kids, stop being such a presumptious know-all
4. Woman stop being nosey we’re acquaintances.
– – –
Yup. I am now super thankful for Sertraline even though sometimes (like now) I feel like 8 months on I can’t decide if its side effects are insomnia or sleepiness (Google says it varies), … so I type this at 4.37 am bcos I inadvertently fell asleep earlier in the night & woke up at midnight, from which I have been wide awake since. Haha oops.
keep on keeping on, x
Oh man sounds like you’ve been through the ringer with meds. I actually took Remeron a couple of years ago and I didn’t gain weight though we were hoping that would be a side effect, but it messed with my sleep rather terribly. After nights of waking up every 20 minutes and having stressful scary dreams we discontinued it. It’s definitely really tough bouncing from med to med and it’s so hard to separate internal side effects from external side effects, especially when a med changes your appearance because that external change can have negative effects on internal thing like emotions and confidence. Such a tangled web! I’m happy to hear you’ve found a med that is working for you, at least better than some of the others you’ve tried. Hope you’re hanging in okay!
Is it!! I do know that every person’s experience on that varies but from the reviews I read online it’s more common to gain than lose weight on it .. but it is true that it had weird sleep effects on me hahahaha the initial days all I wanted to/could do was SLEEP. For like the first week haha. & yes it made me have all sorts of weird, usually very life-like, dreams! I often thought they were real stuff until I woke up heh.
Yes the tangled web thing is true! It’s so difficult to handle having externally visible side effects from trying to medicate a internal, invisible issue 😦
I’m coping okay, with a mix of CBT & meds & secure support systems in church 🙂
press on, you too! I’ve since been reading your blog a bit & for what you’ve gone through at your age (haha your email gave it away that we’re the same age) I admire your positivity 🙂
take care x
This is completely on point. I very much felt this way going thru chemo. I never understood it till I lived thru it.
I’m happy to hear you connected to this post, Denise, and I hope you are doing as well as possible now!!
Have to say this. You are a beautiful girl. On the outside and the inside. Brave, funny, strong, encouraging and a great role model for us all. Thank you for your Blog!
Why thank you Bonnie!
I have a friend who both knows of my invisible illness and struggles with his own– and when we meet up he says to me “You look absolutely marvelous!” bless his heart, and somehow manages to convey the fact that I’m clean and lipsticked looks lovely without disallowing the stupid disease. I wish I knew how he did it, it’s absolutely perfect. And a boost when I feel like dried up spit.
Kate I am so glad you have a friend who makes you feel that way! Bless his heart indeed.
PSA: please, please, PLEASE remember that some of us DO like hearing we look good. Even if we feel like death warmed over, drug back from purgatory, spent 40 years in Hell, and were beat by a yellow eyed demon – we still like to hear we look good. Why? Because some of us, when feeling lower than low need to hear that people still see us and think we look like humans. Sure, some people hate being told they look good (some people with chronic illness just hate life), but there are those of us who LIKE hearing nice things. Most of us live in a world that is so drug down because of a chronic illness, it is hard to remember we are humans and we do like others to treat us as such. It doesn’t make us feel insecure. It doesn’t make us hate you or life. It makes us HAPPY. God forbid somebody with an illness feels any amount of happiness. *insert sarcasm for those who won’t pick it up*. When someone tells me I look good/healthy/nice/happy etc I take it and I say THANK YOU! Why? Because at the end of the day, I am still human and I like knowing that others are paying attention to me and they care enough to say nice things. Most people who say this aren’t trying to be assholes. Most people who say this do it because they genuinely feel you look good. Or they think they will brighten your day. Don’t be a dick because someone is trying to be nice. I ask you, please, don’t label us all. Don’t say we hate it. Don’t say it makes us feel this way or that. I am not you and you are not me. I like it when someone says nice things, out of good intentions. If you don’t, I feel bad for your sad life.
I actually agree with a lot of things you are saying Bertina – thank you for sharing. For me, I don’t like it when it’s used as a platitude…when I say I’m not doing or feeling very well and someone says well you look good anyway. Or when it’s said in disbelief…but you look good, as if I can’t possibly not feel well because I look just fine. But if someone were to just tell me that I look good in passing or just when they see me without any prior discussion of how I might be feeling, then I too would be totally fine with that, smile and say thanks! And even though I don’t always like hearing that I look good, I can guarantee you that I definitely do not hate life!! If you read any other posts on this blog I think that will be very obvious. Most importantly, though, I’m sorry that you are facing a chronic illness but I’m happy to know that you still find happiness and I hope that you will continue to receive compliments that make you feel human and happy!
Yes, yes and yes!
I just started reading your posts, and I like your writing style! My mother had MS for many years and your comments and feelings were much like hers.
I admire you for saying things in a very straightforward manner. People need more of that.
Thank you Carolyn! Sorry to hear about your mom’s struggles, and yours as well because illness affects the whole family. Thanks for stopping by 🙂
yes. yes. yes.
I have also been keeping track of things I don’t need to hear
http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/02/shit-people-say-to-someone-who-has.html
I was just diagnosed with fibromyalgia this year, and I am SO tired of people telling me I look tired. Thanks to fibro I will be chronically in pain and tired for the ReST of my life. So yeah, telling me I look like heck in the form of “ohhh, you look tired” does not make this gal a happy camper!
I can for sure understand where you’re coming from! I meant this more from a ‘well, you look good (anyway)’ in response to an honest update on how I’m feeling. Very sorry to hear about your diagnosis, though.
Thank you for sharing; I too have a chronic illness that I’ve been battling for two years now. Love what you have written and have shared with my family and friends. Sending love and prayers
Thank you Scott! Sending some spoons back your way.
I resonate with this so much. I’m constantly told how good I look, and for whatever reason, I apparently look the best when I feel the worst! Ugh! Sorry you struggle so, but it’s nice to have some company. Misery loves company. Yep.
Sorry for your struggles, as well, but happy that this resonated with you! Your company is welcome here any time 🙂
Reblogged this on Guts and Glory and commented:
I wanted to share this post from Finding my Miracle because it truly explains what it feels like at times to have an “invisible illness.” It perfectly describes the struggles and emotions that I often feel and I’m sure others do as well.
This is so true. I know the feeling all too well. Thanks so much for sharing. I hope you don’t mind if I repost. It just really hits home for me.
I don’t mind at all! I’m just happy to hear that this resonated with you. Wishing you lots of luck and lots of reasons to laugh with your own health struggles!
Can totally relate to the inner conflict you describe when people comment about appearance. For me it’s not so much “you look good”, as “you’re looking really well” that grates! However, I’m training myself to interpret this as “you look lovely” especially if I’ve gone to the trouble of styling hair, applying make-up, wearing warming colours etc to look less scary!
I think many of us are so reserved in how we compliment each other that “you look well” often has a sort of cautious politically correct intention – even though it often misfires! We probably all know people struggling with chronic conditions who make enormous effort to present themselves attractively and we admire their courage and dignity, so I like to be inspired by them too.
Very good points! For me, it’s annoying when I hear “well, you look good” in response to hearing that I don’t feel well, as if that’s supposed to make it better. I like that you differentiate “looking good” from “looking well”
After reading this post, I realized what I would actually like the people I love to say to me if they actually WANT to say something, “You look like today is treating you better” or “Hey, you’re looking like today is better than usual.” I think that it acknowledges that I usually look and feel like shit, but they feel like maybe today is a little easier.
As for the people who I don’t love? I don’t really give a crap what they have to say.
I really like how you worded that! Acknowledging that it’s hard but hoping for the best. Thanks for sharing 🙂
I just saw in your tags that you’ve talked about Ehlers-Danlos before. Is that something you have or just something that doctor’s thought you might have?
It is something that I ‘unofficially’ have hah. I have a lot of signs of it and more things keep coming up pointing to it, but when I saw genetics they wanted me to have an echo and a tilt test done first, so now I’m just waiting to follow up there and get the final verdict. Are you an EDSer?
I am. Diagnosed on 2011. Runs on my mother’s side of the family and is a very frustrating condition to (try to) manage.
You do look good though. 😉
Totally get where you are coming from. I have a invisible illness too.