Now that I am coming up on 10 years of chronic illness and dynamic disability, I wanted to reflect on some of the lessons I’ve learned during that time, and what I wish I’d known about chronic illness from the start.
Tag: EDS
Disclosing Disability: Why It’s Hard to Reveal My Disability to Strangers
I originally wrote this piece about disclosing disability in the early days of my grappling with the loss of dance as a result of my disability. Since then, my baseline ability has fluctuated many times but even five years later, this piece still resonates strongly with the complex evaluation process necessary to safely disclose a disability, and the grief that comes when the onset of disability is later in life.
My Sometimes Invisible Disability
In addition to my disability being dynamic, it also straddles the divide between a visible and an invisible disability, to the point that I can hide it if I want to. But moving between visible and invisible means I also have to make a choice between scrutiny and erasure.
Say Goodbye to the Version of Me You Knew: A Letter to Friends & Family of Chronically Ill People
For years I’ve heard stories from my chronically ill friends of loved ones who abandoned them or who refused to believe that their illness was real. So, I wanted to write a letter to the friends & family of chronically ill people.
Why I Stopped Taking Gabapentin
Please enjoy this article, originally published under the title “Color” in March of 2017, about the early days of my chronic pain journey and my experience with the medication Gabapentin.
9 Things That Blocked My Access to Medical Treatment
This is a new version of an article that was originally published as “26,” about the early attempts to diagnose the cause of my chronic pain and other symptoms, and the many ways my access to medical treatment was blocked for years prior.
Chronic Illness: Wait, Your Body Doesn’t Do This, Too?
A revamped version of my article “The Blue Book” about my discovery of Ehlers-Danlos Syndrome and early struggles with integrating chronic illness into my identity.
“Needing Extra Care Doesn’t Make You a Burden” Got a Glow-up!
Back when we first started designing and releasing our own original designs for merch, in August 2020, our very first design was the simple drawing of an orchid with the words “Needing Extra Care Doesn’t Make You a Burden.” After doing a few more designs, we learned a lot more about how to do digital art, what our style was, and how to make art that prints well. After a while, our first piece seemed …Read More
Young Hot & Full of Moderate to Severe Joint Pain: New Merch!
I made a new merch design based off the Cards Against Humanity chronic illness meme that’s gone around the internet for years.
Adjusting to Social-Distancing & Other Lessons from Chronic Illness
I’d like to share some of my hard-earned lessons that have come from the last 5+ years of managing multiple chronic illnesses and a disability that have since proved incredibly useful during the pandemic.