Introductions

Teona, with medium brown skin and orange dyed locs, grins largely at the camera, her eyes barely open.
Teona grins largely at the camera, her eyes barely open.

My name is Teona and I’m a neurodivergent 23-year-old college student and wheelchair user with multiple chronic pain conditions, a possible connective tissue disorder, dreams of space, and becoming a librarian.

In 2019 I was diagnosed with chronic migraines, Fibromyalgia, and Myalgic Encephamalytis (Chronic Fatigue Syndrome) after about two years of dealing with chronic pain with no answers.

Between waking up daily and going to bed in severe pain and fatigue for these past few years, the experience was exhausting and lonely. Every day before my diagnosis I dealt with the confusion and frustration of not knowing what was going on with my body or how to treat it.

Initially, things were lonely, and I became swallowed by my pain and the depression that came with it all. It took me a while to even call myself “disabled” despite how debilitating my conditions were and how inaccessible the world had become to me.

It was through the disabled friends in my real life and those that I met online that I was able to find comfort. They offered me solidarity, support, and understanding in a world that tells disabled people they aren’t worthy of respect or humanity if they don’t contribute to society in “the right way.”

There’s often this misconception with non-disabled people that once you get a diagnosis that everything suddenly becomes better. Even after my diagnosis, I still deal with the lack of proper options to treat my pain or at least make it manageable. I’m still attending appointments, tests, and evaluations to determine if there is more going on than my care team initially thought.

When I looked for representation, I realized there just weren’t as many black disabled voices popping up when it came to the popular faces I saw on the internet. Being disabled and Black is an experience of intersection that so often is glossed over but it’s so important to talk about.

There’s a traumatic history of medical abuse inflicted on Black people that still has lingering effects today. Between the high mortality rate of Black pregnant parents during birth, the gaslighting and stereotyping of medical professionals to Black patients who are in pain, etc., our skin often depicts the way we are viewed when we go looking for help. This is why so many of us never seek medical help or wait until the very last minute to do so.

I don’t have all the answers to how to solve these issues but I have a voice and a myriad of experiences to talk about. If in doing so, I can add to representation for other Black and disabled people, that’s right by me.

“Being disabled and Black is an experience of intersection that so often is glossed over but it’s so important to talk about.”

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