The Hidden Illness Most People Won't See in This Photo


I look like a well balanced 18-year-old on vacation. My dad took this picture of my on our recent trip to New Orleans. There are many things that must happen before I am ready to present myself to the world. My backpack hold my drain bag of urine, and a tube runs from my belly button under my dress and into my backpack.

girl standing under large tree

My dress also covers my Pull-Ups. It’s a large place of embarrassment for me. My jagged scars, lines that didn’t come out straight and healed into rounded paths that run across my torso.

Every day could be judgment day for someone who has a hidden illness. Why do you wear your pajamas in public? You don’t deserve to be here. Why can’t you be a “normal” functioning person? Can you hide your bag behind you for the picture?

I just started to notice the ableism in my life. The backhand comments, the looks, the ways I’m told that I’ve missed too many days to stay at this school.

People see it as privilege, the ability to get out of going to school and being exempt from school work. Sleeping during the day. All of these things sound nice, but after awhile you wish you could run with the rest of the crowd. I would take consistent and full-length school days over doctor appointments, IV infusions, therapy appointments because of “medical trauma,” and hospitalizations. I’d rather be well enough to do the work than get out of doing the work because I’m too sick.

I look healthy, I am relatively healthy (in terms of things). But, there are still days that I have to sit out, from doctor appointments to pain.

A comment coming from an able-bodied person about a non-able-bodied person, is so often judgment. So, next time you see a child acting out, don’t stop and stare, don’t complain. Keep walking because you don’t know their story.

Or next time you see someone who always falls asleep in class, don’t assume they’re lazy, don’t assume they’re irresponsible. Because you don’t know their whole story.

Don’t laugh at people for their differences, don’t assume, don’t judge.

There are so many positive things you can do:

Make sure someone isn’t falling behind.

Make sure someone is safe.

You can turn your act of judgment into a positive action that will help someone instead of hurt them.

A picture may be worth a thousand words, but that doesn’t mean it tells the whole story.

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