Who am I?
That is the question…
It’s never easy to sum yourself up in a few paragraphs, but I’ll have a go…
I suppose the most important thing to point out, is that I am a lot more than my Crohn’s Disease. Having lived with the condition for most of my life, I kept it a secret for the first decade. I played it down for the next two decades, then I finally learned in the decade that followed (the one which is hurtling towards its end scarily quickly) how to be open and honest without giving up or giving in. I have always been determined not to let a label or an illness define me.
A happy child, nobody would ever have known that I was ill. That was how my parents wanted it to be. For my sake. For their sake. For everyone’s sake. I was, apparently, a little ray of sunshine. Mum couldn’t bear the thought of people looking at her little girl – her perfect little baby – with pity. That’s how I learned to survive. Show the world that I’m okay, and they will believe it.
So I spent a lifetime over-compensating; trying to be super human. If I could convince the rest of the world that Crohn’s wasn’t a big deal, I could convince myself. If I stayed in perpetual motion, maybe it wouldn’t catch up with me. If I ran fast enough, worked with enough determination, played hard enough, lived hectically enough, burned the candle at enough ends…maybe, just maybe, I could outrun my disease.
Only, illness doesn’t work like that. It has a way of catching up with us – usually when we least expect it.
Finally talking about it - #ItTakesGuts 2020
What does it all mean?
I was still young when I learned to take treatment plans and experimental approaches in my stride. Bedpans, invasive examinations, hospital visits and drips with names all became the norm. My norm.
I started taking daily medication when I was 10, I’d had my first major operation before I left my teens, with two further emergency surgeries by the time I hit my mid twenties, I was taught to self-inject in my thirties, and infusions, blood tests, conversations about toilet habits and weight monitoring remain run of the mill.
Yet the news of needing a naso-gastric feeding tube at 35, completely knocked me sideways.
I weighed 34kilos, which is just over 5 stone, and was desperately ill at the time. I was taking half-hourly liquid morphine just to function, but it was still somehow a total shock to be told that this was our plan. I’m not sure I was surprised I needed to take action – however deep my denial was, I knew my body was failing me – I was just absolutely terrified of what the implications of such an intervention were.
You see, to the outside world, I have never looked like an ill person.
Having a tube would change that completely. Everyone would know, from a single glance, that there was something very wrong. Everyone would know that my throwaway remark: ‘I’ve got Crohn’s Disease, but I’m fine!’ was very clearly not the case. All of a sudden, it would be clear just how much of an imposition Inflammatory Bowel Disease really is.
Through writing this blog, talking more openly about what it means to live with chronic illness, I have found greater acceptance of the impact of hidden disability on my daily life.
It is true that more people know just how ill my Crohn’s has made me over the years. More people understand some of the horrors of IBD. People no longer look at my petite frame and think I’m blessed with good genes. None of these things are bad.
It took me a long time to realise that knowing about my illness wouldn’t make people look at me differently.
So, who am I?
I am Emma. I am an Actor and Creative Practitioner. I am passionate about the Arts, I love performing and I believe in the importance of nurturing creativity in youngsters. I find therapy in baking, cooking and painting. I rarely sleep. I see the beauty in things that others might cast aside, and am likely to fall in love with anything less than perfect. I like to play games, stare at the stars, go to the Theatre, sing out loud, feel the sand between my toes, dance in the rain and walk aimlessly. I am a besotted wife, a devoted auntie, a loving sister, a dedicated daughter and a caring friend. I am fun, I am silly, I am wild, I am considerate, I am adventurous and I am bold.
Whether I am all this despite my condition or because of it, I will never know. One thing I am sure of, is that I am so much more than any illness I happen to have.
I have Inflammatory Bowel Disease and sometimes that’s a b#*ch, but Inflammatory Bowel Disease definitely does not have me.