@cririsis: I have truly, genuinely, never been anything but kind. I TRULY have never, ever, engaged in or been brought into drama. The accusations are ridiculous, untrue, incredibly unkind, and very very hurtful, lacking compassion and empathy for someone who has been nothing but truthful, authentic, and kind. To gatekeep a GENETIC ILLNESS is a crazy low. Nobody owes you their medical records and the only business that’s yours is your own. Though you too are valid, the validity of others does not need to be minimized to validate yourself. I will say it again: gate keeping a GENETIC, CHRONIC illness is crazy work. I will share with you that I’ve been unspeakably traumatized by my very scary, very isolating, and very real experiences in the past few years to the point where I do not allow myself to close my eyes and fall asleep until 7 AM when I know that somebody else is awake in case anything happens to me. I have PTSD episodes where the memories feel so real that I can REALLY, TRULY, UNEXAGGERATINGLY *HEAR* the sounds and somehow experience the most fear I have ever felt in my entire life again and again. There has not been a single day in years, truly, nearly (at least) FOUR YEARS that I do not have multiple PTSD episodes per day. My anxiety has only gotten worse over time to the point where it is debilitating. I somehow have so little motivation but so much fomo all at once, when I spend nearly every day sleeping until 4 PM because, again, I do not even allow myself to fall asleep until the mornings. The accusations go far beyond just my v-EDS diagnosis and extend into my worst trauma that affects me deeply every single day. The accusations go as far as to accuse me of intentionally causing my own code. I have never felt so sick in my life. I have never felt more terrified. I experience that same, unmistakable feeling of dread that I did that day thinking that I wouldn’t be alive in the next hour or that I would ever get to see my grandma again or my little brother again. I feel that same sickening, skin-crawling feeling every day. My fear of d3ath has consumed me to where its inevitability for myself and everyone I love is what dominates my mind for the majority of the day and night until I finally fall asleep. I am haunted by doctors telling me that I had an eating disorder or that I wanted this or that I liked it and did it to myself. They made me pee with the door open. I know it sounds stupid, but it affects the little things and the things that are supposed to be fun. If I ever go out to a party with friends and all the other girls can pack into a stall for safety and pee in front of their best friend, I never can again. Even if it’s in front of my dog (who loves to follow me into every room). I used to take little joys in singing in the shower or humming to myself as I got ready in the mornings, but I will never enjoy that again because that’s what they made me do when they accused me of an eating disorder I never had. I have been profoundly, unexplainably affected by my experiences. My very very REAL experiences and diagnosis and what it means for me and for the people I love. Even my pets. Everyone. Everything and everyone, always. It never goes away. People think that I talk about it too much, but its a privilege not to have to talk about it or to have other things to talk about. It’s a privilege to get to talk about your horrible physics midterm or the disgusting frat party you went to last weekend. Some people have nothing else to talk about because it has been their nearly 24/7 for years while everyone else gets to enjoy the short time they have to be young, while the only thing I can think about is that I am getting older each day, closer to no longer being on this Earth, and getting nowhere, doing nothing, and being nobody. To gatekeep a GENETIC diagnosis is a new low. Think before you open your mouth about another person next time. Thank you Kindly, thoughtfully, respectfully, authentically, and powerfully, -Riley ☀️

Ri

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Tuesday 28 October 2025 13:28:42 GMT