People say “you look alright to me” or “I’d never believe you’re disabled” these and many similar phrases are the penance those of us with acquired brain injuries have to bear for not conforming to society’s misconception of disability.
Speaking from personal experience I know that a large proportion of the outside world thinks I am a liar or I’m putting on the symptoms of my condition, be it friends, family or representatives of government agencies trying to prove my condition is totally fabricated. No one who hasn’t lived through any form of brain injury will ever understand the struggle that we live every day.
They don’t see the midnight shopping trips because we can’t stand being surrounded by people, they don’t feel the social isolation we feel because we don’t always interpret situations the same way as we used to, they don’t know how it feels to lose the ability to control what we say or how we say it, they don’t understand that our in-built ability to differentiate between what is appropriate and inappropriate doesn’t always work properly and thankfully they never will. It sounds clichéd but you can never understand anyone’s life unless you have walked a mile in their shoes, but any form of brain injury can have a fundamental affect on your world view.
As a result of a particularly nasty brain infection, meningioencephalitis, my life changed completely. I began to suffer with chronic fatigue, migraines, anxiety, depression, confusion but most distressing were my totally erratic mood swings; the latter causing me to lose my wife and children.
I now live on my own as this I feel is probably the best solution to my problem. The only people I can really engage with are my fellow brain injury survivors. Since I have begun my recovery I have made some really good friends both through Headway Cardiff & South East Wales and at Ash Day Unit and that is mainly because we don’t have to explain our feelings or behaviour because even though we all have had different injuries, we have all experienced very similar after effects as a result of our unfortunate circumstances.
Written by Matthew Johns