Today is rare disease day and the aim of today is to raise awareness for the people, like myself, who are battling with a rare disease, and to get the message out there to the public. First starting out as a european event, its progressed over the years into a global event with over 80 countries worldwide taking place.
So what is a rare disease? A disease or disorder in Europe is classed as rare if it affects less than 1 in 2000 people, or in the states its known as rare if it affects 200,000 people or less at any given time. There are over 6000 rare diseases and for most… there is no cure 😦
I care about this day so much, especially this year, not only because i’m a recently diagnosed patient myself going through the stages of other possible diagnosis’s, but because I now know the struggle that so many people and their families go through and how lonely life can get when people are limited to what they can do, and how frustrating it is to have no cure.
If we work together, we can raise awareness so the ignorance is forgotten. Too many people think that just because someone can walk, talk and get out on their good days, it means that they’re fine and it isn’t as bad as it may sound. This is totally not true. Someone with a rare disease, or any disease, will usually flare up and those days are the days they can’t walk up the stairs to go to the bathroom, or they can’t lift their hands above their head to tie their hair into a ponytail. I know this all too well. Many people need help with cleaning, cooking, even feeding themselves. The taboo of talking about illnesses needs to stop, it’s ok to talk, it’s ok to be heard, and we need to be doing it. There’s people out in the world who are too ignorant to try and understand, we need to send a message to those people and come together as a community.
I’ve been in the horrible situation where i’ve tried to be open about my illnesses to people and i’ve been beaten back down with comments such as ‘you like fine‘ or ‘well you can walk so its not that bad‘. Any sort of comment like that is negative and totally unnecessary, because the truth of it is… those people would have no idea how to cope if they were to step into my shoes for 24 hours. These issues face me every single morning when I wake up, and are still there every single night when I go to sleep. Whether my pain is a 4/10 or a 11/10 that day, that illness is still there and it is still controlling me to some degree. In all honesty, it hurts me deeply that we get beaten down by ignorance time after time because these illnesses are invisible.
The pain we feel is real. The depression we feel is real. The hurt and the anger… it’s all real. Having hyper mobility is no picnic, having a wide range of conditions is not fun, staying at home in bed and quitting University while everyone else my age is out living their lives to the fullest is REALLY not fun.
My rare diseases are part of who I am. It’s part of my life, and it always will be. The ignorance I will face, and have faced, will unfortunately always be there, and the struggle to do anything ‘normal‘ is more than I can take. But when I can get up, when I do have the strength to fight, I am one bad ass bitch that won’t let anything control her happiness.
Anyone with a rare disease, I give you hope, love, faith and every prayer my brain fogged mind can think of.
Remember to spread awareness in any way that you possibly can. Please share this on Facebook, Twitter, via e-mail, Tumblr… anything! You can also donate, or go to the official website for more details and stories submitted by other sufferers.