Hi I'm Stephanie Deleon, and as I near my tenth year disability anniversary in November, I want to think of the things I wish I had at 15/16 years old: disabled role models, community, and a safe space for all disabled people to feel comfortable and free. A place where disabled people can show their joy without society’s prejudices placed on us. 

 

That’s where [In]Visibly Disabled becomes my safe space to share with others. Created in 2020, [In]Visibly Disabled began as a support group for disabled people and allies, now growing into its own website. A Community blog that tells disabled people’s stories, our history in civil rights, and shares disabled joy.

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I became disabled in 2013 after a wisdom tooth extraction gone wrong. A typical procedure that many get done left me with a rare disease— Atypical Mycobacterium Abcessus.

 

The recovery from this surgery should’ve only taken 2 weeks, yet after a month, I had sudden onset swelling on the left side of my face.

I was admitted to hospitals trying to find an answer, only to receive different diagnoses, and trying process of elimination in hopes of finding the cause at no avail.

 

After 3 months of being undiagnosed, my body began to become affected in many areas: I developed Mitral Valve Prolapse, moderate Gastritis with ulcers, & had constant ovarian cyst ruptures that required immediate hospitalizations. 

 

The closest they were able to get to a diagnosis was finding a visible mass in my X-rays with no plan to find out what it was or how to treat it. 

 

My body was giving up on me and nobody could give me an answer as to why it was happening. 

 

Finally, after 8 months of desperation and extreme pain, I went back to my doctor absolutely gutted & at the verge of giving up. She rushed to get me immediately admitted to Nicklaus Children’s hospital, where they kept me for 3 additional months for constant testing and isolation. 

 

An Infectious Disease doctor was assigned to my case and sent a Tuberculosis test, where it came back slightly positive. They removed the mass and did a biopsy, where they finally found Atypical Mycobacterium Abcessus. 

 

This organism colonizes poorly sanitized medical equipment. It was localized in my jaw, & went undiagnosed for 8 months. With doctors having no answers, all this time the bacteria rapidly spread, resisting all medications. It caused severe Osteomyelitis (infection of the bone), Trigeminal Neuralgia (nerve damage), severely hypertrophic masseter muscle (overgrowth of the muscle), and Fibrous Dysplasia. Basically, the infection ate at my bone, and caused it to become soft tissue.

 

During and after my treatment, I developed several disabilities: Psuedo-tumor Cerebri (IH), Complex Regional Pain Syndrome (CRPS/RSD), Endometriosis, POTS and others. All of which you wouldn’t know by just looking at me.

 

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TLDR; The Disabled community is the largest marginalized community that anyone can become a part of at any stage of life. It does not discriminate. We are dynamic, static, visibly, and invisibly disabled. We are here, whether you see us or not. 

 

 The [In]VisiblyDisabled blog was made to be a conversation about disability awareness, community, pride, and allyship. 

Hope you join us!

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-Stephanie Baell Deleon