We don’t like to hear that we look good. Here’s why

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.

 

Dear…?

For the month of March themighty.com is asking readers to write a letter to their illness or disability. So I wrote one. And then they put it on their website which is kind of fun! Here’s what I wrote.

Dear…?

Well, actually, I don’t know what to call you. I could call you Gastroparesis, but that’s just your first name. I’m still trying to find out what your last name is, how many middle names you have. My digestive system wasn’t enough for you so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

But name or no name, the struggle is the same. You make every day a challenge and you make being alive more complicated than it should be. I can’t eat because of you, so I eat through a tube in my abdomen and a central line in my bloodstream. I take medications to help my body do the things it has lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you, and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I had to give up a job that I loved. Thanks to you I had to drop out of university. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the very same goals I’ve had to set aside.

But thanks to you I’ve made some new friends. I have met so many wonderful people because of you. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They have given me unconditional support and I’ve learned how to offer that support in return.

On the one hand, I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections and you’ve given us a lot of opportunities to be there for each other when we are most vulnerable, which is also when we are most honest, when the knots are tied the tightest. Throughout the past five years I have never felt more discouraged, frustrated, tired and lost, but I’ve also never felt more loved. I know that’s because of you.

You’ve caused me a lot of hurt. I grieve my old normal all the time. I grieve the me who was always on the go, who thrived at school, who was involved in everything and actively trying to make a difference. She was motivated, hard-working and full of energy. She was smart and she was going places. I liked her.

My new normal is different. The new me is quieter, but wiser. More tired, but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. She’s slower to judge and quicker to empathize. She knows how to ask for help and she keeps going no matter what.

And you know what? I like her, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me but you’ve made me more grateful. How is that possible?

It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and successes in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is that I get to choose what I see. And if I look for the good, I know I will find it.

You taught me that.