Am I invisible?



I hate the attitude the medical world and society hold towards illnesses. I feel like most doctors and scientists are only interested to find a cure/treatment for illnesses that are common. Most people only raise money for diseases that have effected/ may effect them in one way or another. I see the sense in that, but what about those that aren’t common? Are we not important enough? What about those who suffer silently because of little awareness that such an illness exists.

This frustrates me so much and makes me so angry to believe that for 7 years, a condition has had free reign to destroy my life and my mobility, a condition which forced me to need a wheelchair after 5 years of NO motivation to try stop the damage. No doctor, no physiotherapist, no one made any attempt to investigate the cause or try to prevent my transition to the same extent as they would have if it was a more common, life threatening condition. I have nothing but praise for the British doctors and around the world who have dedicated their careers to find treatment for LCH, who tried and treated me of this disease initially at three years old. Most Irish doctors however, don’t give a fuck as to how a rare condition, diagnosed in Ireland continued to hack away at my mobility 10 years after original diagnosis, I feel a ‘haven’t heard of it so don’t care’ attitude has been taken on when dealing with my condition. I didn’t hear of one single person raising money or trying to build awareness for LCH, like they would have for cancer or the likes.

I’m on a chemotherapy trial drug now… after 7 years of damage, 7 YEARS of unnecessary loss that might have never happened if this disease had more awareness for funding or was more common to motivate society to feel the need to help raise necessary funds for a prevention.
I may have found an answer for recovery, but it may be too late. There may be too much damage for the chemo drug to reverse, or it may have too little to no effect on the damage already caused. It may be too late to get my old self, that I so desperately want, back.
Everyone’s life should be treated with the same importance, and first world countries have no excuses.
I feel like society and the medical world failed me, failed my quality of life, failed so many others around this first world who live with similar conditions and diseases.
What is necessary to happen for LCH to have the awareness it deserves? For someone of topic to die?
While a lot of people call my state, my situation a “disability” remember that it was a state that could have been avoided. It is partly the result of a condition which SOCIETY failed to acknowledge and help raise ‘in the nick of time’ awareness.
They say that “nobody cares unless you’re pretty or dying” , but I don’t think that’s true; only those affected by an illness common enough to raise concern are cared about.MRI comparison 2006v2013

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