Every illness needs a voice and the sadness of someone we love or even ourselves becoming sick with an illness is hard enough but, if that illness is rare, it makes the fight even harder.
Speaking from a personal perspective, it hits home even harder and the notion that every illness needs a voice rings very true. Furthermore, it feels that our struggle becomes all that much harder when we, as a human blend into society as we go about our daily tasks without anyone noticing the struggles we are actually going through.
However, this all changes when you have a status in society and when you are known for what you are doing in the public eye. Suddenly every illness needs a voice takes on another meaning because you are no longer alone and everyone including strangers start to rally around. All of a sudden, the illness that was once in the shadows of society starts to roll off of everyone’s tongue and, couple this with injections of money pouring into research, it makes the rest of us feel somewhat left in the wings.
It feels like I keep on running but I can’t get to the mountain and the tunnel with that very distant flicking light seems impossible to reach. So, why is one illness more important than another? Why is something suddenly more important based on your place in society, money and who you are?
If the government in the UK can give money to support illnesses based on factors which are sometimes so unfair, why can’t they fund our beloved NHS properly to help more people instead of the select lucky few?
Should we feel bitter? Should we feel let down? I think we have the right to because no one illness is more important than another and every illness needs a voice.
Statistics of the illness, I and many other people suffer from, Primary Sclerosing Cholangitis, show that 1 in every 10,000 people are diagnosed with the illness. This is nearly 7000 people in the UK and we also need help.
As there really are a small number of people suffering from PSC and many other rare illnesses, it is up to us to help each other and to help those in the future by taking part in as much research as we can and as many clinical trials as we can while, at the same time, of course shouting our rare illness from the rooftops because right now, it seems that we only have each other to fight this fight.
“Education is the passport to the future, for tomorrow belongs to those who prepare for it today.” – Malcolm X
Thanks for reading.
Peace, Love and Light x