I Have An Invisible Illness – Here’s Why You Shouldn’t Tell Me I Look Good

This post originally appeared on TheMighty.com, a website that finds strength, joy and beauty in disease and disability.

Source: Author

Source: Author

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 anywaybut 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.

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Born and raised near Vancouver, Canada, Catherine Richardson was a physiology major, a research assistant and a dance teacher when her life got flipped upside down by chronic illness. Part human and part medical device thanks to her central line and feeding tube, she is now blogging and crocheting her way through all of the unknowns and finding lots of opportunities to give her sense of humour a little exercise. You can find her hanging out over on her blog or on Facebook.