Having experienced symptoms associated with the neurological condition I live with, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others’ looked down on me, thinking of me as odd and different, just like the villagers in the classic Disney film. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it this that I have resonated with over the years and perhaps one of the reasons it remains my all-time favourite film.
Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the puzzle that it was meant for. Of course, I have had made friends during my thirty years, but just like the seasons, they have come and gone. I have been bullied by so called friends, or otherwise ostracised by my peers; unable to understand my unusual ‘quirks.
Rejection is something that I have dealt with over the years and the reason why I find it so difficult to trust people. I am extremely protective of my heart, preferring to keep people at a distance before they hurt me.
It’s difficult living with a neurological condition that affects your perception of the world. For example, some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places because they leave me feeling very unwell if I am exposed to such triggers.
It seems that if you decline invitations on several occasions, you become a social pariah and invitations are no longer offered. And that hurts because it’s not that we don’t want to go to trips to the cinema or go shopping with friends, but we are unfortunately limited by symptoms of our health condition. We desperately want to be included within the goings of our social groups and invited to events even if we aren’t always able to attend.
I am limited so much by my condition; the dizziness that can be so disabling that it leaves me disorientated and confused, and the trembling in the legs so severe that I have no idea when they are going to give away that I am unable to go out without somebody else with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, the majority of my time is spent at home; confined by the same four walls every day, often by myself or surrounded by the same faces. Spontaneity is near impossible and so impromptu trips to somewhere that takes my fancy is inconceivable as a captor to chronic illness.
Living with a chronic illness can often feel like being trapped in prison, from which there is no escape. Trapped inside of our own bodies. Trapped within our surroundings, held hostage by our symptoms. It can often feel that they are in control of our lives; that we answer to them regarding what we do during the long days living with them.
Chronic illness often shrinks our entire worlds. And not just our physical surroundings, but can affect our social lives. For me, this neurological condition has shrunk my whole existence; my whole world is now so small that I could live on the smallest island and still have space to widen the world in which I live.
I have recently read ‘Happy’ by the talented Fearne Cotton; a book that she was written to help readers let go of the idea of perfection and to instead embrace and enjoy the small, everyday joys in life. In one of the chapters, Fearne discusses the concept of ‘gangs’ or ‘packs.’ Groups in which we feel we belong, as well as those friends who we can call upon during turbulent times. Reading this chapter, made me realise how isolated I have become due to chronic illness. How I have very few people in my life who I can trust and rely on, and how I have very few friends that I can go out with and have a chat over coffee and cake.
I have made friends who also live with chronic illness through Twitter or even through writing this blog, and although these relationships have become meaningful, the distance between us irks me. If only, they lived closer, to allow us to have a relationship beyond a computer and telephone.
I have no clue on how to overcome this isolation and escape from this prison that chronic illness has forced me into and how to meet new people when these symptoms restrict my life so. How I want to break free from this darkness and see the light and freedom that life has to offer.
Do feel like a prisoner due to your condition? How do you cope with this?