Rare Disease Day.

This year more than ever, I can’t ignore posting about this day- Rare disease day; a day which means so little to most but so much to those who fall under the bracket of ‘rare’.

All health conditions deserve awareness but today is dedicated to the ones that no one has heard of, the ones that have limited research and the ones with no miraculously discovered treatment/cure.

Being classed as clinically extremely vulnerable but not being able to confidently explain what your own condition is can make you feel like a fraud. How can I expect others to understand if I don’t fully understand myself?

I have a rare disease, a disease particularly rare in the younger population. There is no research showing how this might progress as I age; it’s kind of like staring into the unknown, completely unaware of the path ahead.

Rare is often referred to as something that is of interest or value due to being unique, some may even say special. But when it comes to health, rare feels quite the opposite.

Lack of awareness, research and treatment does not make me feel special. Looks of disgust from the public does not make me feel unique. Negative comments about my personal health by people considered friends, does not make me feel valued.

I shouldn’t have to feel scared to talk about my condition just because others don’t think it’s real. I shouldn’t need to hide how I’m really feeling because others will say I’m making a fuss. I shouldn’t have to justify why I need to rest.

Rare disease day exists but how many people actually know about it or what it’s purpose is?

I struggle to comprehend that we still live in a world where we are judged from how we look on the outside or what we share about our lives on social media. People don’t take enough time to sit and ask how others how they are in a way that means something and isn’t just a passing comment.

Lockdown has been hard for everybody but even harder for people who have been forgotten. The people who have basically been locked away for a whole year, only seeing the outside to go to medical appointments.

People say that they have missed you but if someone really missed you would they ignore your existence in a time where you needed them most?

So I am telling everybody who is considered rare that I hear you. You are not a fraud and you are not incapable.

This rare disease day, please check in on someone who has been shielding for the most part of a year. I can tell from experience that this time has been hard and just having somebody ask if you are okay, can really change the mood of the entire day.

Sending so much positivity to everyone during this (still) tricky time!

Ky x

1 thought on “Rare Disease Day.”

  1. I completely understand the feeling of not being able to comprehend about the disease that one suffers from but good hope and faith almost helps me every time.
    Its so good to see your blogs after some time, I hope you have been in good health these days, and if not, don’t worry, good times will always come soon!

    Take care though we are definitely going through some tricky times!

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