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By Ella Crossley (she/her)
I am Ella, a sixteen-year-old girl with Crohn's Disease this isn’t something that I tell people very often, for the simple reason that I’m embarrassed by it. I’m not ashamed of the fact that I am ill, it doesn’t make me feel weak or less able in anyway whatsoever. It’s the disease that I have which poses a problem for me.
When you google Crohn's disease, the symptoms you are met with are frequent sometimes uncontrollable diarrhoea, blood or mucus in stool, vomiting, weight loss, etc. These are not the most glamorous of things that can happen to a person. I don’t tell people I am ill very often, it’s not because I am emotionally constipated despite what my family often thinks, rather because I don’t want people to ask what my illness actually is.
Quite frankly, my disease makes me feel disgusting sometimes. I don’t want people to know that I tend not to do certain activities because I’m scared that there won’t be a toilet there, or that I can’t always follow through on plans because of tiredness, because after all everyone is “tired”. As much as I try, my illness is not always easy to hide. In November 2017 I had a feeding tube fitted for 8 weeks in order to increase my weight and try and chill m bowels out (not the technical term but it’s what I took from it). I was in Year 10 at school during this time and unsurprisingly had to go to school during this time. I got out of hospital on the Thursday and my Mum made me go to school on Friday to get everyone seeing me over with. I have never been more scared than I was on that morning, it wasn’t just that I would be inevitably started at for having a tube stuck to my face, but also the fact that people would ask questions that I wasn’t particularly eager to answer.
To my surprise, people were actually quite nice about it, there were a few comments but its high school, so I wasn’t exactly shocked. I remember my friends telling me that a group of boys in my year had asked them what was wrong with me and why I had the tube, that they didn’t really know what to say, but in all honesty, I wouldn’t have known what to say either. If I was asked directly I would make a stupid joke and divert the conversation because taking about it made me uncomfortable.
I don’t think I ever fully understood my illness, I still don’t really. Which is maybe why I was (and still am to some degree) so ashamed of it. If someone was to ask me what Crohns disease was, I would have no idea what to say. I know what has been happening to me for the last three years of my life, but I don’t really know why. Maybe that’s my first step, finding out what causes IBD, rather than focusing on all the poopy (literally) aspects of it that I experience. Then hopefully with a bit more understanding, I can start to accept the fact that I have this illness and will likely have it for as long as I live. At the end of the day, I can live in embarrassment forever or I can embrace the fact that my body is actually pretty cool for being able to deal with the various symptoms I am faced with. I shouldn’t be ashamed, I am very aware of that.
I should be proud that I deal with this chronic illness on a daily basis, but like everything else, these things take time. Maybe the last three years was that time for me and I can now accept my illness as a part of me that makes me a little more interesting than I was before.
(Originally published 14/1/21)