Bethany is one of the Co-Founders of BVisible, a non-profit organisation which works to bring disabilities that are out of sight into mind. She is also currently working in the fundraising department at Great Ormond Street Hospital Children’s Charity, as part of her University placement year.
It seems ironic that I’m writing about what it’s like being a student with Crohn’s disease, when I so rarely went to school.
Crohn’s took a long time to diagnose, due to added complications from other
health conditions. My symptoms began during Year 9, and I didn’t receive my
diagnosis until the end of Year 10. Once I was stable enough to return to
school, I was so far behind on the content that there wasn’t much point in me
returning to class, as I wouldn’t have been able to follow.
This meant that my time at school was solely spent playing catch-up. Not just with my studies, but also with my friends. I might have managed to leave school with 9 GCSEs A-C, and triple A at A level; but I also probably changed friendship groups every other month.
My ‘friends’ would get angry, I’m not sure why. Perhaps it was because they didn’t like being left alone in science class; or because whenever I came back I looked ‘well’ and managed to get the same grades as them; or just because 16-year olds lack empathy. But, of course, what they didn’t see was how difficult it was for me to keep up: the attempts at concentration when I’d fall asleep in the middle of writing due to Crohn’s fatigue; the hour long breaks on the toilet in severe pain; and the consequent lack of study breaks as so much of my time was spent being ill.
Make sure you are a priority
I very quickly learnt during my GCSEs, that being a student with Crohn’s (or any illness for that matter) is all about learning to prioritise yourself. Don’t give time to those that aren’t helpful or encouraging – whether that be friends or teachers – because as long as you know that you’re trying your best, nobody can ask any more of you. Only you know your body, the symptoms that you live with every day, so anybody that makes you feel bad about that isn’t worth wasting time or emotional energy on– you use up enough energy battling an invisible illness every day.
Crohn’s has most definitely changed my entire student experience, whether that
be missing school, or not going on as many nights out at University, it has
shown me who my true friends are and which teachers I can rely on. It has also
taught me how to work independently, how to self-motivate, enhanced my social
skills, and improved my time management. Most importantly, it has shown me what
I’m capable of. All of these skills, and more, will prove invaluable both
during and after my education. You’d be surprised how many unique skills you’ll
gain as a result of living with a disability, even if it’s just added
resilience. If anything, your experience will you give you a head start on
Crohn’s and the workplace
Although I’m yet to graduate, I have managed to land a placement this year and – honestly – the best career advice I can give you is to believe in yourself. As painful a cliché as that sounds, and as much as I still struggle to follow this advice; 90% of the time when you try and do things with a disability – whether that be sitting an exam or applying for a job – most people will assume that you aren’t capable. Especially if you have an invisible disability, when employers can’t clearly see what reasonable adjustments you need (unlike, for example, a ramp), so they may make inaccurate assumptions.
everything and everyone is pointing towards the fact that you won’t be
successful in life, because society has this warped idea that disability and success
are mutually exclusive, you need to find someone that will convince you
otherwise – and who better to do that than yourself?
Know your own body
Get to know yourself and your body – discover what you can do, and remind yourself of that ability every day. You’ll only learn what you’re capable of by believing in yourself, so apply for the jobs that scare you. Go for the job that might not seem sensible because when you live with a chronic illness, all you ever hear are the reasons why you can’t do something, why it’s not sensible, how your health could get in the way. Take a blind leap and push those hurdles out of the way. This method has always worked for me, try it – I reckon you’ll surprise yourself.
– seeing as we’re talking about Crohn’s Disease – ask your teachers if you’re
able to use the disabled toilet at school. Pooing at school can cause so much unnecessary
anxiety and, as much as I was rarely there, so didn’t have to regularly face
this issue, my school used to let me use the disabled toilet and I don’t know
what I would have done without it. So ask, there’s nothing wrong with asking
for support, and your school have a duty to provide it*.
brave! Be unapologetic. Ask for gastric accessibility, remember, it won’t
always be like this. One day you won’t have to see the students (or teachers)
currently making you feel bad about your illness, believe in yourself and
remember that disability and failure are not mutually exclusive. You’ve got