This Is My Experience Being in Public With My Invisible Illness

Esther Lowery wrote a short fiction story to help the public understand what it feels like to have an invisible condition, and Fixers created the short video above based on her story. Read the original version of Esther’s short story below:

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have always considered parks to be some of the worst places to visit. Granted, there’s grass and trees and lovely flowers, but there’s also a lot of people. And I really don’t like being around a lot of people.

My brother, Mike, is the complete opposite to me. He’s already gotten into a conversation with a woman near the lake. I grimace and lean back against the bench. My hand absently starts to trace the gap between the wood on the bench.

“Ow!” I yelp, pulling my hand back. A tiny splinter of wood has taken upon itself to embed itself into my finger. I scowl and inspect the tiny wound.

I can barely see the splinter, but I can certainly see the blood starting to leak from it. Tiny splinters are the worst.

“Katie,” Mike runs over to me, “what’s the name of that tree over there?” He pointed to the tree in question.

I raise an eyebrow. “It’s an oak tree. Why?”

“No reason!” Mike runs off again, returning to the woman. I should probably be concerned that he’s talking to a total stranger, but he can take care of himself. Besides, I can still see him.

I yelp slightly, as my back twinges in pain. I reach back and rub the spot. It doesn’t help much. I sigh. Maybe I’ll go and sit on that other bench. It’s closer to the lake, so I can keep an eye on Mike better. Besides, lakes are fun to look at.

I stand up, and a wave of dizziness forces me back to a sitting position. “Great,” I mutter under my breath, pulling my wheelchair closer. I hate having to use it, but ever since we came on holiday to Cornwall, I’ve been finding it difficult to do anything else.

I stand up and transfer to the wheelchair. I sigh in relief once I’m sitting down. The chair is far more comfortable than that bench. The twinge in my back seems to be fading a little.

“Hey!” A voice sounds behind me, and I turn. A tall boy, perhaps my age or a little older, is standing there. He’s surrounded by other teenagers, both male and female.

“Nice chair! Sure you need it anymore? You seem to have been healed!”

I feel my face heat up, but I force down my anger. It’s not the first time I’ve got that response from someone, and it won’t be the last. Don’t listen, just go.

I begin to wheel away, but I can still hear them yelling as I go away. “Miracle, miracle!” they chant, and continue to do so as I get further and further.

Mike seems to materialize next to me. He always seems to know when I’m in trouble. He glares over at them but turns back to me quickly. “Need any help?” he asks.

I nod. “Would you help push my chair?” I ask. I can feel my wrists starting to ache from the strain.

He nods and takes a hold of the handles.

“Don’t listen to them, Katie. They’re just idiots.”

I give him my brightest smile. “I know, Mike. I don’t mind.”

He doesn’t look convinced, but leaves the subject alone.

***

I sit on my bed. The room is empty, far more empty than the one at home. But then again, my bedroom is exceedingly messy. So this is probably better.

I sigh and stare at my hands. I have literally never realized before how much I bite my nails. Wow. Impressive stuff. Mom got the splinter out once Mike and I got back from the park. It’s a little sore, but not too bad.

I cringe at the memory of the park.

No matter how many times people say things like that to me, they’ll never stop hurting. I still stand by what I said to Mike earlier; I know those kids were just idiots who didn’t understand what they were talking about. But that doesn’t mean that it didn’t hurt. It just means I don’t hate them for saying it.

I sigh. “Mike,” I say.

“Huh?” Mike appears in the doorway, and I hide a smile at his oh-so-intelligent response. And the fact that he was definitely listening in. The paranoid wombat. “Yeah?”

“Do you think that I’m making things up?” I ask.

He frowns. “No, of course not. Why would you think that?”

I shrug. “No reason. I guess I’m still a little worked up from earlier.”

“They really upset you, didn’t they?” He sits on the bed beside me.

“A little.”

“Oh come on, it was more than a little.”

“OK, a lot. But it doesn’t really matter.” Even though I brought it up, I still don’t want to talk about it.

“Look, Katie, you’re not making it up. I’ve seen you, remember? I’ve seen you fall over after nearly passing out. I’ve seen you start to limp after just a few minutes of walking. I know you are not making anything up.” Mike seems convinced. Me, not so much.

“But what if I’m making things seem worse than they are.” This is something I’ve thought about a lot. I often worry that I’m just exaggerating, and I don’t even realize I’m doing it.

“Nah. I’d know if you were.”

I roll my eyes. “Why, because you’re an expert in Ehlers-Danlos syndrome?”

“No. Because I’m an expert in you. We’re twins, remember? I know everything about you, and you know everything about me. That’s just how it works.” Mike grins and I laugh.

“I guess so,” I say. My voice is soft.

“I know so.” He looks at me right in the eyes. “Look, don’t let people like that bother you. They don’t know anything about you. If they did, then they’d agree with me!”

I shake my head at him. “Since when did you become all mature?”

“You know, I really don’t know. Oh no. Maybe you’re rubbing off on me!” He makes a face. “Oh, the horrors!”

I burst out laughing at his antics. “Oh, I don’t know. Maybe you’ll finally stop talking to random strangers if I continue to rub off on you.”

“Hey,” he says. “There’s nothing wrong with that.”

I just shake my head at him.

Maybe he’s right. Maybe I really don’t make things up. I wish I could know for certain, but I guess it’s not so bad. At least I have an brother who’ll tell me that sort of thing. I might tease Mike, but I can’t imagine life without him. I don’t even want to.