What people don’t understand when you look so ‘normal’ is that even when we look ‘normal’ the pain is constant. Always there lingering like an annoying fly and conjuring like a pot of hot stock waiting to burst. What they don’t understand when they say ‘you don’t look sick’ is the effort it takes to wake up every morning and not ‘look’ sick. What they don’t understand is that just to wake up and make our way out of bed is an accomplishment, blessing and effort in itself. What they don’t understand when they look at us funny when we say I can’t feel my arm is that it’s not OK to then pinch my arm to see if you REALLY can’t feel it because you look ‘too normal’ for you not to be able to feel your arm. What they don’t understand is the anxiety our disease brings as we can’t anticipate how our body is going to shit itself on us on a daily basis. Cue the crazy ass looks I get when the spasms I get in my chest, ribs and muscles hit me in the middle of a meeting or shopping centre and cause me to react like I’m the star in a badly produced horror movie of a serial killer knifing its victims. We are armed daily with weapons of choice to make us ‘look normal’. Thank you Chanel Perfection Lumiere foundation for covering the bags under my eyes and my parents for looking after my teeth as I grew up; so I have a pearly white smile to flash as my weapon of choice in order to ‘not look sick’ and be ‘normal’.
This leads me to the baffling questions:
- WHAT IS NORMAL? And
- WHAT DOES SICK LOOK LIKE?
Sometimes because I don’t look sick I am consumed with so much guilt about not being able to do things people my age can do or cope with. Our perception of sick is so societal. Movies have paved this image that you have to be frail, pale, bed ridden and in a wheel chair; anything that doesn’t look ‘normal’. It has been a huge disservice to those battling daily with invisible diseases and to those trying to raise awareness. YES, sometimes we are bed ridden, wheel chair ridden, frail and pale but most of the time we pride ourselves on how we can still live and enjoy our lives all while battling with a neurological disease that causes us fifty million different symptoms in unison. It used to really upset me that people think I don’t look sick and pass judgment as if to say ‘I’m faking’ or ‘it mustn’t be that bad’. It used to really upset me when people would roll their eyes because I was working from home AGAIN. It doesn’t upset me anymore – I am proud of the way I have chosen to cope with my disease! Just because we choose to find happiness and success through our pain and choose to seek happiness through our battle should not make us any different to any ‘normal’ person. We are ‘normal’, actually we are super normal, super human beings that can still smile through the pain. We don’t want sympathy, we just want to actually FEEL normal and remember the days we didn’t feel pain. We do that by pretending and deploying our weapons of coping because we have no other choice. If we chose to look like a typical sick person everyday how would we get on with life. So much of our lives with MS we cannot control but we can control our attitude and how we react to the cards we’ve been dealt. So the next time someone verbally abuses me for parking in a disabled spot I won’t fold and walk into the shops and cry I will stand tall, flash my smile and tell them what’s what!!!!