Coming out of Hibernation

Addison Smith
5 min readMar 4, 2022

I haven’t been writing much for the last couple of years. I once tried to put out an article a week, but my health took a turn for the worse in 2020, and no, it has nothing to do with COVID-19.

Around the same time that my daughter was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), I started to show increased signs and symptoms of the disorder. hEDS is a genetic disorder, so obviously I’ve had it all my life, but just as COVID hit, my symptoms began to snowball. (No, really, that’s what it’s called.) Suddenly, the weird injuries and unusual ailments that result from hEDS went from the minor inconveniences I’ve had all my life to life-altering problems. I asked my doctor (geneticist, specifically) why it would get so bad so quickly in middle age. The answer was essentially, “We don’t know; it just does that sometimes.”

Photo by Pawel Czerwinski on Unsplash

I guess you’re wondering what the hell hEDS is at this point. Well, hypermobile Ehlers-Danlos Syndrome is one of the thirteen disorders that bear the EDS moniker that affects the connective tissue in the body. Connective tissue is about 80% of the body. Your skin, eyes, tendons, ligaments, lungs, GI tract, blood vessels, sheathing around the nerves, and more are all made of connective tissue. Connective tissue itself is made up of collagen, and there are nineteen types of collagen in the body. The type of EDS you have depends on what kind of collagen is affected.

hEDS affects Type I collagen found in the tendons and ligaments, skin, parts of the GI tract, and nerve sheathing. It’s the most abundant molecule in the body. The poorly formed connective tissue causes the tendons and ligaments to be weak, which in turn causes your joints to bend too much or move in odd ways, to become hypermobile. That’s where the disorder gets its name. Think being “double-jointed” in just about every joint.

“What’s so bad about that?” seems to be a lot of people’s reaction to that description. It’s simple and complex all at the same time.

Photo by Pawel Czerwinski on Unsplash

Every time someone with hEDS injures or even strains a joint, that joint becomes weaker. Eventually, that joint degrades to the point that it doesn’t function properly…

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Addison Smith

I’m an LGBTQ+ DEI educator, activist, and writer living in the Midwest with my cat. Call me Addi. They/She. Booking and more info at https://addisonsagenda.com