Diversability® reposted this
Most Influential Disabled Person in the UK | Government Advisor | Global Future Young Leader | Founder & Investor | Campaigner & Lobbyist | Researcher, Policy & Legal Expert | Speaker & Consultant
It’s rare disease day. Hi I’m Celia and my disease is so rare its not even listed as a rare disease - fun. Having a rare disease is like being in a real-life scavenger hunt, except the clues are super cryptic and the treasure map is in Latin. You’re constantly trying to find someone who actually understands what’s happening with you, but it feels like you're the only one who read the secret manual. Doctors take turns playing “guess the disease,” like a weird game show, and you’re just there, hoping they don’t ask you to spin the wheel of symptoms again. Having a rare disease is like being in an exclusive club, but no one gave you the membership card, and you didn’t even know the club existed until you randomly stumbled in. You’re a VIP, but not the fun kind—more like the “Congratulations, you’re special, but no one knows what’s going on with you” kind. Having a rare disease is like being a character in a mystery novel where the plot twist is that no one can figure out what your "condition" is—everyone’s like, "Hmm, that’s a puzzler, let’s try some weird science experiment!" But you get to be the star of all those quirky, out-of-the-box treatments, and your medical chart could be considered avant-garde art at this point. Explaining it to people? Oh, it’s a game of “Guess the Disease”—except, you’re the only contestant. No one really wins, but you get to make all the doctors feel like detectives. They’ll give you a look like they’re about to solve the case, only to find out the real mystery is... you. So today, just take a moment to pause, reflect and celebrate our rare disease community. Rare Disease Day is dedicated to raising awareness for the approximately 300 million people worldwide living with rare diseases. Today we highlight the challenges faced by individuals with rare conditions and to advocate for improved access to diagnosis, treatment, and care. It’s about shining a spotlight on the fact that rare doesn’t mean invisible—and that the people who navigate these conditions are absolute warriors. Today isn’t just a celebration of survival, but a cheer for progress, understanding, and hope 🎉 #Disability #ChronicIllness #Disabled #RareDisease #RareDiseaseDay Image description: The image shows Celia, a white female with blond hair tucked behind her ears. She is wearing a blue suit and has her hand rested on her chin as she looks into the distance with a neutral expression on her face.
Your beautiful prose plus head shot reminded me randomly of the game ‘Guess Who?’. Maybe there should be a Rare Disease version of it…
Thanks for sharing this with us Celia 🙏💓 I can't imagine how hard it must be to asking for help and not getting it because of all the systemic barriers we have in our society. The fact that you had to adapt to this new reality as an adult as well it must have been really hard. Your work is helping so many others to find hope and people who don't have a rare condition to understand how we can be agents of change and a supportive community. Sending a hug 🫂
Spot on & you summed up how many of us rare disease patients feel. Never having a real name for all the things going on in our bodies! Feeling like it’s a real life scavenger hunt in your body, or being in an exclusive club but wasnt given the membership card 😆 or guess the disease game! I’ve felt like all of those at one point or another in my life! All we can do is try to make light of it, share & educate others to what it’s like being medically disabled, having frequent hospitalizations, being hooked up to tubes for nutrition, countless doctor appointments, procedures, medical PTSD that comes from it all & the list continues! Thank you for sharing! 👏🏻💕
And in the bonus round, you get to spin for symptoms the doctors don't believe.
Thank you for sharing. Such a beautiful post and it will help raise awareness and reduce stigma
Thanks for continuing to share and educate us all Celia.x
Happy to help to shine the light on this Celia Chartres-Aris (née Hensman) - will repost for reach.👊🙏💜
Great post Celia Chartres-Aris (née Hensman) let’s put us rare ones in the spot light and see how bright we can be Let’s blind the people that don’t understand us
For so many with rare diseases their condition is also hidden - by that I mean that the average person in the street wouldn't know if they simply met you, yet it has such a huge impact on everyday life! Thank you so much for raising awareness for all those who are affected in some way 🙏
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1wThis resonates with me a lot - I have been under the diagnosis process for 10+ years already, and doctors still can't quite figure what is wrong. I've been under treatments for things they thought I've had, only to find out "oh, it's not actually what we said it was". Is my disease rare? I have no idea, because no one at this point can even pinpoint what it is. I've been told it's "not like anything we've seen so far here" and that the only solution is to "just wait and see for it to look more characteristic". And I've been waiting for over one third of my life already and spent thousands on apppointments and medical tests. Thank you for posting this and making me remember there is a community that can offer support on the darker days.