Hi hi, I just wanted to say thank you for the kind of posting you do. Bit of a tangent, so if you want a tldr thank you for making me feel connected to all the other people and I am sending you many many virtual hugs and good food
I have an extremely rare disorder that less than 1 thousand people globally have been positively tested for. I was in my teens by then and I wasn’t officially diagnosed with it until I was 17. So. Lonely. It’s multi system, so I have heart disease, epileptic seizures and ictal psychosis, autism, EDS, ME, lupus, deformed kneecaps and joints (in that, I don’t HAVE kneecaps), chronic kidney infection and liver damage from all of the medications I’ve had chucked at me for 20 years that didn’t work. And now I’m late 20s and so deeply lonely. My health has recently begun getting so much worse to the point I spend months in bed. I started off 2026 by going into kidney failure and getting sepsis. I finally hit my wall not long ago. When I was younger, it was easier. Easier to compartmentalise and easier to imagine a future where someone would go Aha! That’s what we do! and I could live the life I wanted and be independent. Easier to get sick and recover. And like, I’m Peruvian-Irish, I’m kind of obsessed with death lol and it never bothered me. But now? My body is keeping score. It’s taken so many hits. Countless infections, countless injuries, countless instances of brain damage… And I don’t know how many more hits my body can take. I don’t know its limit. It’s at the point where every infection, every flare, every episode could genuinely kill me. I don’t mean to be dramatic, but it’s true. And I just have nobody. My mother can’t get a visa to take care of me, there’s no medical care at all where I live, the council has only given me 9 hours per week to pay for a carer. My world is so small compared to what I imagined it would be. But reading your posts and learning about your experiences, it helps. I’m not alone. I’m stuck in a dark room in my bed but I’m not the only one. It’s not unique to me. Someone out there understands me, someone out there could — if we ever met — see me for me. Not as a patient, not as a disabled person surviving on scraps of benefits, not a “Survivor” or “Warrior” but just as me. Someone with interests and a whole other internal world. Someone who would see the chair, see my walker, my joint braces, see the endless prescriptions and keep looking. Thank you for making me feel like I’m worth being known. Thank you for making me feel like a person. In my household, cooking for people and eating with as many people you could fit around a table was how we said I Love You. I want you here and you are welcome any time, I hope you will eat well and be strong. I haven’t sat around a table in over 10 years. So, I invite you to come to dinner. You always will have a spot at my table
hello, sending you sososo much love. thank you for sharing your story, you are heard and seen here 💗💗 there absolutely are people who will see you for who you are, and you’re absolutely not alone, there are so many of us similarly isolated yet similarly full of love. i often think of my extended online circle of disabled/chronically ill people as an interconnected web of hearts all over the world. i see lines connecting us all. now i will also think of myself as sitting at your table! what a beautiful invitation. sending warmth to you and thinking of you today 💗💗
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