I was quite shocked when several months ago I received a letter from an Autoimmune group I belong to, who were trying to raise funds from members and the community. I was invited to participate and enter a “fun run” and I was also expected to go around my friends / relatives and gain sponsorship dollars for competing. OMG! I couldn’t believe my eyes! The words FUN RUN just stared back off the page at me!
I can barely move and walk unaided, and many of my fellow AutoImmune sufferers are in similar (if not worse) conditions. This group who are supposedly representing our diseases are inviting us to run a bloody marathon!! What message does that send to the community? I mean an afternoon tea? Maybe. A readathon? Possibly. A ‘buy-a-ribbon’? Why not. But a marathon!?! They even have media coverage of it!
What message does that send to those who have no idea the challenges we face day to day?
Each day we fight for respect and dignity and to try and educate others about the battles we fight and this is the way our own societies portray us… Is it any wonder that people have so many mixed messages and prejudice about chronic illnesses and Autoimmune diseases?
If people think we are capable of running a marathon or tests of physical strength then why would they believe me when I tell them I lose my vision, my limbs don’t move, I shake, or my bones are being eaten away, I struggle to swallow and breathe? That each day is a physical and emotional battle to overcome fear and disease progression?
True, there are some more ‘high functioning’ ones amongst us, however they may represent about 15% of the overall figure of those affected by various Autoimmune diseases.
I do fight my own battle every bloody day and I find these letters just offensive. (I also wrote and told them this too).
Everyday we are confronted with pictures of celebrities and personalities who are coming out with chronic illness and looking a glowing picture of health. However, I (and over 80 million others) can only WISH that were our own personal story. Where are the pictures of what a flare/relapse or progressive disease looks like?? I bet 99% of people would not know what agony and destruction a relapse or flare looks like and for those of us who are “systemic” it is a slow but steady decline and a long battle just to hang on to what we have left. All we can do is our very best to hang on to the physical functions we have and hope that someone will come along with a cure in the meantime. And that is what I do. I can’t know the future or even tomorrow but I am not going to be in denial about today!