An Open Letter To Anyone Who Has Ever Told Me "But You Don't Look Sick"

This is an open letter to anyone who as ever told me “you don’t look sick.”

This is an open letter to anyone who has made me feel like I needed to prove my sickness, like I needed to showcase my struggle in some external way, like I needed to fit a mold they had constructed in their mind.

This isn’t a letter that is meant to attack you, but instead a letter that is meant to make you rethink the words that come out of your mouth and open your eyes to a new perspective – a perspective I hope you never have to experience first-hand.

You see, when you tell someone “but you don’t look sick” you may think you’re giving us a compliment. Maybe you think because I still have my makeup on and my hair done, that means it makes the pain or fatigue or fear a little duller. Or maybe you think looking good makes up for the fact that I have a disease. Or maybe you think giving me that strange compliment will help you avoid talking about the fact that I have a disease because I’ve found most people have a hard time with that topic.

But most of the time I hear the edge in your tone. The questioning in your voice. I see the scrutiny in your eyes. “But you don’t look sick” typically feels like a challenge. A statement with an unsaid “prove it” hanging off the end. A statement that feels more like a question – “if you look the way you do how can you be sick?” A statement that comes with the underlying tone of, “I don’t believe you.”

What you don’t understand is when you tell me I don’t look sick, it makes me even more anxious when I feel my sickest. Because the more my struggle is diminished by your comment about my looks, the more I overthink what others see. The amount of times I have suffered through finishing out a class in college or a work day or a social gathering simply because I knew no one would believe the pain and discomfort I was in makes me angry now. Not angry at the people who made me think this way, but angry at myself for letting what others thought of me control my actions.

Thankfully with age I have simply chosen to not care what others may perceive of me when I make decisions based on a disease they cannot see, but the disbelief in your voice, still hurts nonetheless, even if I no longer base my actions off of it.

And I think that’s a big part of it – people are taught to only believe what they can tangibly see so it’s hard to wrap their heads around the un-seeable.

But maybe that’s a bigger narrative that needs to be discussed – a narrative that discusses how we, as humans, should simply learn to show more compassion, even if we cannot fully understand or comprehend what someone is going to. Because if I’ve learned anything from having a chronic illness myself, is that being understanding doesn’t need to stem from an actual understanding of what someone is going through, but simply a decision to believe and support them.

And the thing is, is there have been times when I have looked sick. Looked “the part.” And it’s sad, because it almost felt like a relief. I remember a moment laying in the hospital thinking “maybe people will believe me now” and it sickens me to think back on that memory. Because no 22-year-old girl should feel relief as she lays writhing in pain on a hospital bed, simply because the world has taught her to put on a brave face to match her outer appearance.

But what you also don’t know is having an invisible illness like IBD also impacts our mental health. Even on the days my stomach feels better than others, my mind is still racing, worrying, afraid. When the physical symptoms subside, the anxiety doesn’t. Because having a chronic illness isn’t a “part-time” thing, a “once in a while” thing, an “only sometimes” thing. It’s a full-time thing. So even when my body behaves, I don’t go a day (or probably an hour) without thinking about my condition. Because you see, IBD has a mind of its own and I never know when it will strike. I never know when the pain will come. I never know when the fatigue will set in. I never know if my medication will stop working. I can’t plan when I do or don’t flare, or do or don’t land in the hospital.

Sick is multi-level and truly, honestly, cannot be boxed into an image that makes sense in your brain.

So, tell me, what does sick look like? Because to me, being sick looks a lot like internal pain, internal anxiety, internal struggle. Being sick looks like making hundreds of calculated decisions throughout every single day of my life to ensure I’m supporting my body and my illness. Being sick means suffering silently. Being sick, for me, actually looks nothing like looking like anything different than my normal self.

So, please, remember, seeing isn’t always believing, especially with chronic illness.