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: chronic pain
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.
Accessibility, Social Justice, and Self Growth: How to be an Accessible Person
When I joined the disability activism community, I learned a new frame of reference that changed how I engaged with the world at large: Accessibility. I had no idea that this concept would expand for me from a branch of activism to a life philosophy and identity: How to be an accessible person.
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.
Celebrating Disability Pride Month
Disability is a framework that teaches you to prioritize the needs of your mind and body over the expectations of society. To celebrate disability pride month, check out these articles to dive deeper into the experience of disability and chronic illness.
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.
What Does Dissociation Feel Like?
How did I spend ten years of receiving treatment from eight different therapists, as well as doing my own research on mental health, and never realize I was dissociating so much? Because I didn’t realize what I was feeling was dissociation!
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.