The hardest thing I’ve had to deal with at university hasn’t been the deadlines or the stressful workloads – rather, it’s been Crohn’s Disease, my incurable and chronic ‘invisible’ disability.

By Amy Aed

Living with a malady where my immune system  is constantly attacking the gastrointestinal tract (along with offering malnutrition, hair loss, tooth decay and other minor inconveniences), trying to manage my condition for the first time alone has been more than difficult. Thankfully, after several
months of studying as a full-time student, I have learnt more about how to deal with having an inflammatory disease, and am able to advise and talk about how to better prepare yourself for those long months away from home to other silently disabled people.

Sort out accommodation

The first thing anyone with a disability should do after acceptance is apply for accommodation. By law, it is the responsibility of the university to offer reasonable adjustments to fit the needs of a
disabled student – meaning that for myself, after contacting them I was put first on the list for a room close to campus with an ensuite bathroom.

Make the university aware

Letting the university know straight off the bat that I have Crohn’s meant that they were able to make personal amendments to my course – such as extended deadlines in times of a flare-up of symptoms. Everyinstitution  will have someone to go to with any disability related issues, and so it’s also good to familiarise yourself with the people that can facilitate assistance.

Register with a GP

Having visited the GP over 15 times and the hospital three times since starting the firstterm , I’ve had to go against the advice of university staff (due to the long-winded nature of transferring medical records) and change my GP practice from England to Wales (near to campus). This way, I haven’t had to travel over 200 miles each time my flimsy immune system has let me down.

Turn up with all your notes

As it takes months for medical records to successfully transfer between countries (if not years), turning up prepared with all my notes and photocopies of my files was a massive help – especially when visiting a gastroenterologist who had no prior knowledge of my medical history.

Stay up to date with vaccinations

Living in such close proximity to thousands of new people from all over the world means that illnesses are going to spread quite easily among us. So, while you can’t prevent catching at least something, having jabs for the strains you can, should be a priority.

Stay in contact with supportive friends and family

Considering the fact that this was the first time I’d spent any prolonged amount of time away from my home town, staying in contact with those who already know my issues and struggles was a big help with settling in to new surroundings.

Know your limits

Picture the much-famed ‘Fresher’s Week’ – endless parties and good times, the beginning of lifelong friendships and a time to do stupid things and drink until you pass out. For me, having a disease which affects my whole digestive system means that consuming alcohol makes me unfathomably ill. Yet for those first few weeks I tried to ignore the pains and deterioration of my health caused by said drinking, only for it to hit me in one fell swoop, leaving me ‘bedbound’ for days. I have since returned to a state of abstinence, but knowing my limits was a learning curve for sure, and one I could have done with realising prior to starting the term.

Utilise stress-coping mechanisms

Crohn’s Disease is an illness that flares up when I go through bouts of stress and anxiety, which can be exacerbated when dealing with university life for the first time. Learning how to work through said stress in the form of discovering anti-anxiety and yoga classes on campus has meant that I have found tested means to keep the stress at bay – even with a never-ending supply of looming deadlines.

Talk about it

Suddenly, having to deal with every aspect of Crohn’s by myself, in the form of newfound independence, I’m having to talk about it openly for the first time. Telling everyone from flatmates to complete strangers (even pinning a list of what I can and can’t eat to my communal flat fridge). Not only have I found a safe space to discuss my disability, but I’ve also come across more people than I could have imagined who also have similar conditions.

Don’t isolate yourself

It’s easy to isolate yourself when faced with new and uneasy situations such as adapting to university life, but it’s important to confront your symptoms and anxiety and get out there. Shutting yourself away from other people always makes things worse, especially when a sedentary lifestyle can heighten the symptoms of diseases such as Crohn’s.

Starting university was a rocky road paved with uncertainty and doubt – would I get judged and ignored, spending day and night as a recluse in my bedroom? I was relieved to discover early on that the answer was a resounding ‘no’. Having learnt through trial and error, I have compiled this advice to help those of you starting a course to hopefully deal with the whole conundrum a little easier.

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Other resources can be found at: Crohn’s & Colitis UK