My Crohnic Life


I live in a body made of glass.

Sturdy, but always at the risk of shattering in one fell swoop.

How do you find strength, when your body, your home, is falling apart? Any movement risks another piece to fall out of place.

I remember what it was like to live without this fear, this pain, this burden.

There were warning signs… but I ignored them.

I, instead, put my body through 15 years of a physically brutal sport for any human: soccer. My passion allowed me to play through the warning signs; the concussions, sprained ankles, broken bones, swollen joints, torn tissues, pulled muscles, ankle surgery, muscle contusions… the list goes on.

I eventually had to cut ties with this love of mine… and I’m still not quite fully healed from that heartbreak; it honestly rivals the painful wounds plaguing my body, which I’m sure owe some part of their existence to the beautiful sport I dedicated my young life to (a story for another day).

As a once dedicated athlete, who pushed her body further than any human should, it’s hard for me to accept that I can hardly type this out from bed, without my fingers and wrists threatening to dislocate.

I once had a six-pack… now replaced with a bloated and lumpy tummy, uneven from surgeries and missing organs. There are scars, emotional and physical, scattered across.

The powerful legs that swiftly carried me are now thin and shaky and often fail me.

I weighed in at 110 lbs. at Mayo… and I know very little of this is muscle. I haven’t weighed this much in longer than I’d like to admit.

Two days ago, I was able to leave the house, drive myself to the grocery store… and this was a celebration.

This celebration quickly turned to worry, as I had to figure out how to carry my two grocery bags across the Trader Joe’s parking lot without dislocating my shoulder… especially because, when I was inside, I had already popped my wrist out of place.

This simple day that signified a leap in progress and strength for me, was called a “lazy day” by my cashier.

He went on about how jealous he was that I wasn’t at work… if only he know that I never get to leave work.

I am constantly working to keep this body together. To keep it functioning. To keep it moving. Breathing. Eating. Resting. Healing. Learning. Advocating.

Lazy? Living in a body made of glass is anything but.

I am trying my best to keep from shattering, but that is a risk I cannot fully control.

The once warm and thriving tissue that made up my being has hardened into brittle glass. This is part of my reality with Hypermobile Ehlers Syndrome (hEDS). It’s a part of my life that I am struggling to find any love for. I have battled to love and advocate for my body as these diseases have taken over it; how do I love the fragility and delicacy that threaten my being every single day.

I don’t feel safe in this body, this home. And you shouldn’t throw stones at a glass house, right? I preach to love your body and own your scars, but I want to throw fucking rocks at this glass house of mine. Like I have for years. It’s high pain days that make me start to shatter.

Last night, I was on the brink.

But today, I vow to myself to instead grab the glue and work to patch these cracks that are so close to crumbing in on me.

I will leave my bed, to move and breathe and eat. I will work today to show my body love, even though I don’t want to. I am still in so much pain, and I’m preparing for another rough night.

I am still working to forgive myself for the lack of care over the years, that has led to such a delicate home.

I live in a body made of glass.