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'But You Don't Look Sick...'

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I hope this post doesn’t come off bitter or scathing, but I am so tired of people’s judgmental and malicious comments, especially when they assume you must look a certain way for sickness validation and support from your friends and family.

I have enough to deal with, as do many others — why must I also deal with disease ignorance, like people saying I am “faking” my illness based on my makeup? Why do I need to look “bad” and feel bad, too?

And what does that even mean? I don’t “look” sick enough? What am I supposed to look like? What am I supposed to look like to help you believe I hurt? How am I supposed to look to help you believe I am in constant pain, even with a smiling face?

I’m sorry I don’t look sick to you, so why don’t I start posting pictures of all my fun toilet contents? I’m sure that’ll clear up some of your doubts.

A banner promoting The Mighty's new Crohn's & UC Support group on The Mighty mobile app. The banner reads, Join the Crohn's & UC Support group to connect with people who understand life with IBD. Share resources, advice, triumphs, and struggles with others who get it. Click to join.

Just because I don’t always look sick and I put on a happy face doesn’t mean I’m not sick and struggling. Of course, I’m going to share my cute photos. Don’t you?

I’m sorry I don’t post enough selfies or images from my illness, but you can’t blame me for posting photos of myself that I like. I am rarely seen with a face full of makeup, so I’m going to share those images for the world to see…

You think of all things to fake that I really wanted to fake bowel disease and to be forced to discuss bowel movements for the rest of my life? No. Thank. You.

I don’t look sick?

1. I can look “good” on the outside and feel bad on the inside. Of course the photos I share are “good” photos… I’m not going to share pictures of me puking or shitting blood now, am I? I can look pretty and still feel pain and be sick.

2. How do you know what I, or others, struggle with daily? Other than the info I share online through my social media posts or blog. And if we rarely talk, you can’t assume to know all about my life, my battle, my journey with this invisible illness. You think you know me, my pain level, my feelings, but you know nothing. Be glad you can’t relate. Be glad you don’t understand what I go through daily.

3. If I want to do my face and hair every single day, I will. If I want to shamelessly share my “good day” selfies because I’m feeling myself, I will. If I want to waste a day’s worth of makeup to sit at home, in pain, in and out of the bathroom, and never leaving pajamas, I will. You should know I do my face once a week, if that. Why do I have to feel bad internally and look “bad” externally, too? Why is my makeup a representation of my pain level for you?

selfies of a woman with crohn's disease with and without makeup
Photo via It Could Be Worse.

4. Crohn’s and other bowel diseases are not something that can be faked, so if I’m feeling like doing my face, know I’m not miraculously cured. If you think I don’t look sick enough, you need to rethink and examine why exactly you think every doctor I have seen is wrong, why every pill capsule I have had has shown Crohn’s disease, and why I am using dangerous biological drugs, because, you know, they give those out to everyone. And I guess that’s why it took two years for a final diagnosis… because the doctors love a scavenger hunt for symptoms like my pain that you claim aren’t real.

5. And finally, let me see your doctorate for gastrointestinal diseases, since you know what someone with an invisible illness like Crohn’s should look like.

Why is my smile on the outside a representation of my pain level I am struggling with on the inside? Why do you question it when what we invisible illness warriors really need is support and belief that when we say we feel bad, we feel bad, regardless of attire, makeup, smiles, or happy personalities. I’m struggling to find the silver lining, so don’t question my outside appearance when you have no idea what I deal with on my insides.

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Originally published: October 24, 2016
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