My story
My name is Kat. From a young age, I was diagnosed with one thing after another. Unfortunately, these diagnoses did not explain all my symptoms leaving most of my health issues undiagnosed. This caused me to be abused through the school and medical system for most of my life. As a result, I was left to suffer in silence without the accommodations or medical care I needed for years. I was constantly treated as if my medical conditions were behavioral issues. By the time I got to high school, I was sent to a separate day camp for kids with behavior issues for being in the bathroom most of the time because of a bladder condition. The place was a holding cell for kids with mental health issues and my education was severely affected. This place wasn’t equipped to teach multiple children. All of us were at different grade levels, learning 8 different subjects. I had to endure meetings where they made goals for me to be in the bathroom for a shorter amount of time and to make fewer trips, something I was incapable of doing. I was constantly told my pain wasn’t real and given a bathroom timer aimed at embarrassing me. I was verbally abused and punished by the staff. Furthermore, I was robbed of a proper education. After years of mistreatment and feeling hopeless, I ended up attempting suicide. Thankfully, after 3 weeks in the ICU, I survived. I was later medically homebound for my anxiety and depression from my mistreatment at school. After graduation, I took my health into my own hands and was diagnosed with interstitial cystitis at 19, a condition I had since I was 5. 2 years after that, I found out about my 2 rare genetic conditions, Ehlers-Danlos Syndrome, and Dyskeratosis Congenita. They explained all my other symptoms and connected the dots to all my previous diagnoses. I was later diagnosed with autism, explaining my years of sensory and communication issues. Getting diagnosed with all my medical conditions felt like slowly gaining pieces to a puzzle I didn’t know I was trying to put together. I still feel guilty for the symptoms my interstitial cystitis and other conditions cause me, but my diagnosis allowed me to learn how to love myself and give myself grace finally. I’m excited to say I am now a proud disabled woman that documents my journey online and provides support for others that are undiagnosed. I might still be working through all the ableism I endured growing up, but I survived something I was afraid I wouldn't, and for that, I couldn’t be more proud of myself. If you get anything out of my story, remember that everyone has been undiagnosed at one point or another. Don’t judge others and never forget: you know your body better than anyone else, so please listen to it.
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