Why Ehlers-Danlos Syndrome Feels Like a House Filled With Unpacked Boxes

I could copy and paste a long list of symptoms from the National Organization of Rare Disorders here to reference what I experience every day, but that’s not why I write. For medical information you should speak with a doctor. For a real person account of pain due to a disease that’s extremely difficult to diagnose and for which there is no real cure, I’m here. In more ways than one, I am here.

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

So what does Ehlers-Danlos feel like?

Imagine you’re trying to unpack your dream home. The movers have left and now everything is stacked in boxes, waiting to be unpacked. You’re excited because this is the home you’ve always wanted, you have energy and you can’t wait to see what your home looks like with all of your things in it.

Then you have to find the box cutter. You left it right there but now it’s not there. You remember you left it in the kitchen. You take the short walk to the kitchen and get your box cutter. Now it’s time to unpack!

You unpack one box but you’re suddenly really, really tired. You just need to sit down for a few minutes. Moving is overwhelming, you tell yourself.

When did “a few minutes” become a month? You still haven’t unpacked those boxes and now you have grocery bags to carry inside, too.

You’ll get to the boxes tomorrow, for sure.

When did “tomorrow” become six months?

You’re living in a house with boxes stacked wall to wall now. That’s just how you live, you guess.

The groceries are all put away but you just don’t have the energy to cook and make an attempt at the boxes.

When did “six months” become a year?

You’ve just been so tired, and every time you try to open one of the boxes to look inside for something that’s been missing for a year, your hands start to hurt. If you have to reach up for one of the boxes, it’s your arms and shoulders. If you try to carry the box to a better location, it’s your knees.

You just can’t find the energy to unpack your boxes. So you live in your dream home, but it’s empty, and you’re alone because you can’t invite anyone over with all of these boxes stacked in the living room, blocking the couch that was never moved to the right place.

Year after year you live in your dream home, but you’re just so tired that you forget how hard you worked to get there.

That’s what Ehlers-Danlos feels like.

Getty Image by Ryan McVay