The Chronicles of Chronic Illness

• How a Traumatic Life Change Taught Me How To Live

“Cheer up!”

“Have you tried essential oils?”

“Maybe you should try losing some weight?”

If I had a dollar for every person who tried to heal my body with terrible advice, I’d probably be able to afford all the medications they have me on.

I’m Ashley, and I’m a chronic pain & illness sufferer.

My official diagnosis’ are: Ehlers-Danlos Syndrome Type III (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), fibromyalgia, atrioventricular nodal re-entry tachycardia (AVNRT), plus I’m a genetic carrier of the Marfan gene. Those are just the things that they’ve found.

These are fancy ways of saying that my body is trashed. Like, frat boy in the Snake Pit at the Indianapolis 500 trashed. Jess from “New Girl” after a bad break-up trashed. New York City after the big fight scene in “The Avengers” trashed.

Let me back up give you a very lightweight version of what each of these disorders are-

• EDS is a fundamental breakdown of the collagen & connective tissue of the body. This supports the joints, the intestines, skin and blood vessels. My joints dislocate constantly, skin rips and bruises, and I’m disgustingly flexible. Over time, all of this causes damage to the joints and tendons, such as tears and separation from bone.
• POTS is a nervous system dysfunction. My heart rate, blood pressure and body temperatures are usually low, but often go wonky and crazy over things as simple as standing up or lying down. Some POTS patients faint- a LOT. I don’t and I count my blessings.
• Fibromyalgia is a neurologic condition that makes us feel pain, and makes us feel it frequently. Imagine having your blood struck by lightning while it’s filled with shards of glass, and that will give you an idea of what it feels like.
• AVNRT- Blood is supposed to go in one ventricle of the heart and out the other. On occasion, my blood does a whirlpool dance in the middle and refuses to pump back out. This makes my heart rate skyrocket as it works harder to pump that blood out. My personal record is 211 beats per minute while sitting down. I had surgery for it last year, but it appears to have failed.

Now, I’m sure everything I just piled on you can seem like a bit much to process, and trust me when I say I feeeel you on that.

At the age of 26, I started noticing a lot of problems with my health. At that point, I was a triathlete, weight lifter and personal trainer. Eventually I caved and went to a sports doctor, who shrugged his shoulders and basically told me I was overreacting. Eventually, I convinced him to send me to physical therapy, where I was told I was “a ticking time bomb.”

Since then, I’ve dislocated my ankles, knees, hips, wrist, finger, shoulders and jaw. I’ve almost fainted so many times I’ve lost count, lost circulation in my fingers and toes, have had dangerously low blood pressure, and the list goes on.

In 2017, knee surgery and the first reconstructive surgery on my left shoulder. In 2018, a heart ablation to try and fix my AVNRT, then a secondary surgery on my left shoulder which resulted in bone anchors, Kevlar sutures, and cadaver tissue (which I’m almost certain make me part zombie btw).

What does all of this mean? Why am I having you read all of this complicated medical jargon?

Because all of this has taught me one tough lesson: Your outlook is up to you.

It sounds so simple, right? It’s not. The days I’ve spent in bed, sobbing in pain, wondering why God would allow this kind of thing to even exist, are countless. It would be so easy for me to give up; to be angry and hateful towards everyone who has a healthy body.

Instead, I’ve learned to use these experiences to learn. To grow. To empathize with the struggles of others. The amount of difficulty that the physical pain causes for me, is the difficulty that poverty or hunger causes for someone else.

If there is one lesson, one plea I could leave with you, it’s this: Pain is relative. Everyone is experiencing it one way or another, and it’s none of our jobs to decide who has the right to be the most miserable.

Be kind.