I HAVE

I’ve never been able to get this down before because I can’t remember the beginning. How do you tell a story when you don’t know the beginning or end?

I have two chronic illnesses. I am also the 1 out of every 4 American adults with a disability that impacts major life activities. (1) I have an Ehlers Danlos Syndrome and Dysautonomia.

I have invisible illnesses. For me, Ehlers Danlos Syndrome causes widespread pain, subluxations, difficulty swallowing, and skin issues. Even though EDS affects every part of my day, the only visible “proof” is when I use my forearm crutch. Dysautonomia affects my ability to stay hydrated, digest food, and regulate my pulse and blood pressure. It comes, and goes. Some days I can’t eat, or I even struggle to get out of bed. Whereas other days I can run errands and go to the gym. But almost every day someone tells me I don’t look “that” sick.

I have a genetic illness. That means I was born with it. I was even diagnosed, clinically, with an Ehlers Danlos Syndrome as a young kid because of my irregular gait and extreme hypermobility. My family history of previously diagnosed family members didn’t hurt either. It’s actually one of my first memories.

I have a connective tissue disorder. Connective tissue is defined as tissue that connects, supports, binds, or separates other tissues or organs.  Collagen is the main structural protein found in most connective tissues and EDS makes it difficult for me to produce functional collagen. Collagen acts as a kind of intracellular “glue” that gives support, shape, and bulk to blood vessels, bones, and organs such as the heart, kidneys and liver. (2) My body cannot produce collagen properly. Connective tissue is apparently pretty important- and mine is faulty.

I have a “rare” illness. Most people have never heard of either of my conditions. If they’ve heard of EDS it’s most likely from one of the two episodes of Grey’s Anatomy that mentions it or due to the recent increase in awareness thanks to Jameela Jamil, Sia, and Lena Dunham all expressing their challenges with EDS. However, this means many doctors don’t spend more than a single lecture period learning about it. And while Dysautonomia is not considered rare, lack of awareness both publicly and within the medical community means diagnosis often takes years. I am lucky enough to work with a neurologist who is well respected for his work with Dysautonomia, but many doctors still don’t understand or treat it. In 2019, while in Manhattan at one of the largest hospitals’ Emergency Department, the head nurse had never heard of Dysautonomia. The leading advocacy and awareness foundation, Dysautonomia International was founded fairly recently, in 2012.

I have incurable illnesses. That means that no matter how many prescription medicines or supplements I take; no matter how many traditional and Western therapies I try; and no matter how many doctors I see (some even internationally recognized) I may not “get better.” Now, many appointments begin with, “You understand that we can’t cure you?”

1-https://www.cdc.gov/media/releases/2018/p0816-disability.html

2- https://nutritionreview.org/2013/04/collagen-connection/

To learn more:

What are the Ehlers-Danlos Syndromes? | The Ehlers Danlos Society  

What is dysautonomia? | Dysautonomia International