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A Visual I Created to Explain Ehlers-Danlos Syndrome

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Oobleck is fun and messy to play with, usually associated with a kids classroom to teach the fundamentals of kinetic energy; remember that part as it may become important for us way later on down the road.

Before we dive in, for those of you who may not be so familiar with this noteworthy slime, let me teach you how to make it; it’s quite simple. Oobleck is nothing more than two parts cornstarch one part water. That’s all there is to it.

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

So what exactly would we have in common with oobleck slime?

With Ehlers-Danlos syndrome (EDS), we live tricky lives putting puzzle pieces together: be it trying to figure out what’s going on inside our bodies, working to get our diagnoses, or even how to process all of the above (plus more). It’s overwhelming. I, personally, have royally struggled myself.

I have recently taken on the personal challenge of trying to find a visual for my fellow fighters… and I believe I have managed to do just that.

When someone is living with Ehlers-Danlos syndrome, their tendons and ligaments are on, what I like to call, a permanent vacation. The tendons and ligaments in the body of an “EDSer” are overstretched and overworked and there is no getting them back without surgical intervention — and we will usually only resort to that in dire circumstances.

So where does that leave the rest of us? What is holding us together? How are we making it day to day on these weak, dislocating, subluxing, mess of joints?

Muscles! Our muscles are the only thing that is holding us together… and oh boy is it a daily fight, literally. I covered this in, “Two Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis.”

Our muscles overcompensate for what our tendons and ligaments cannot and will not do, due to the genetic make up in our bodies.

Using oobleck I am finally able to show you a visual of what’s happening inside.

Oobleck tenses up when pressure is applied, much like when we are walking, moving, or even active in general. Our muscles do the exact same thing to hold our joints in place for the tendons and ligaments.

On the contrary, when you relax, the oobleck turns into a liquid and melts. When we are at rest, our muscles finally find a window to try and rest and will loosen up and that is precisely why our joints are more susceptible to subluxations and dislocations. When we go to sleep and wake up in excruciating pain, it’s because our oobleck muscles gooed up and our bones got free reign of our body. We wake up and have to crack our joints back into place, the oobleck muscles tense way back up, and we go on about our day.

This is our visual. I have found it.

Furthermore, I have a funny feeling that with a little more research, there may be a science in there with the kinetic energy applied that could explain to those doctors, who don’t believe us, why the muscles holding our joints in our sockets is so exhausting and so very painful.

Keep fighting zebras. I love you all.

Image via Meredith Madhatter’s YouTube channel

Originally published: November 10, 2020
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