Managing the Demands of a Degree with a Long-term Illness

 

Cerys Whiting is a final year BA English      student based at the Streatham Campus. We asked her to look back on the last three years and her experience of studying at Exeter with a long-term illness.

“Be kind to yourself, ask for help when you need it, set attainable goals, plan ahead, prioritise, keep it all in perspective.”

 

When I came to university, I was undiagnosed and struggling to manage a condition I didn’t know anything about.

I started my English and Drama degree but soon realised I couldn’t compete with the physical demands from the Drama course, combined with my low grades I made the decision to drop it from my degree title. However, that’s not to say that my disability prevents me from doing the things I want to in life. It was just a part of one of the big life lessons I’ve learnt whilst here; my health is a priority. I used to feel guilty for saying it, the emphasis placed on university was so intense that I felt guilty for not attending a seminar, despite being in so much pain that I couldn’t get from the bed to my en-suite without crying. Acceptance isn’t something that comes easily when you’re diagnosed with a long-term medical condition.

For me, being diagnosed with Fibromyalgia and Joint-Hypermobility Syndrome midway through my second year was both a relief and a challenge. I finally could put a name to the chronic condition that had been hindering me for the last four years, but also found myself faced with a new set of rules. I was discharged back into my GP’s care with the advice to pace myself and research self-help websites. University is a stressful, often lonely time for a lot of students, let alone those with new diagnoses. That’s why I believe the support the university offers through the AccessAbility team is vital. The Fatigue Social Group is a place to feel understood and connected to other students, when you may be feeling so very alone. The sense of community is comforting to many, and the advice offered by the team including Disabled Students’ Allowances (DSA) and career advice, is unparalleled. I know my university experience would have been a lot harder without them.

“Recognising your right to say ‘no’ is a beautiful thing and a vital skill for someone with a hidden disability.”

Having a hidden disability is tough, it’s an undisputable fact that most people will judge from what they can see. From the angry looks from strangers for not offering up seats on public transport, to explaining to friends for the third time that although you might look fine you don’t feel well enough to go out; it all takes its toll. The internal monologue of wanting to push just a little bit harder, prove that you can still do ‘normal’ things, alongside perceived judgement from others can be not only isolating, but incredibly frustrating, and very often leaves you in a worse state. Recognising your right to say ‘no’ is a beautiful thing and a vital skill for someone with a hidden disability. You don’t have to justify yourself to anybody.

There are a number of things I could recommend from personal experience to make managing the demands of a degree a little easier. The primary solution for me is to ask for help when you need it. It doesn’t matter how long you’ve been living with your disability, whether you’ve been diagnosed from birth or just two weeks, there is always support available, so utilise it. I didn’t claim DSA until my third year of university because I felt undeserving of the help available, I’m thankful that I was persuaded otherwise as the equipment I received makes day to day university work a lot easier. I’ve maintained great communication with my personal tutor who is aware of everything going on in my life and supportive of my struggles. Just dropping your tutor a line or two to update them about anything significant that may be impacting your performance is worthwhile. Having an Individual Learning Place (ILP) in place means exam provisions can be put into place and is helpful for other aspects of university life, such as reduced seminar participation due to fibro-fog or needing to leave the room without question. It can reduce and often eliminate the embarrassment many people with hidden disabilities face when asking for help. There’s an efficient system in place to apply for extensions and deferrals if necessary. With some disabilities, especially those of a fluctuating nature it can be difficult to stay on top of work, despite your best efforts at planning. The mitigation system is there to be used in circumstances like this and applying for extensions isn’t something to feel ashamed of.

“When I came to university, I was undiagnosed and struggling to manage a condition I didn’t know anything about.”

One aspect of university life I really struggled with was feeling like I’d lost my ability to socialise. This should not be the case. Every society has a responsibility to make their events accessible, and lots have their own disability officers on committee. Speaking as a society Disabilities Officer, if you’re curious to join a society or have a passion that you’re not exploring for fear of being unable to participate, reach out to the committee, they’ll be happy to help.

Ultimately, I think every person will have a different experience at university, but it shouldn’t be overshadowed by disability, because we are not defined by our disabilities. As Mark Twain said, “comparison is the death of joy”, and often it’s about perspective. Rather than viewing my conditions as limitations, I remember that I have my own goals and methods of dealing with things. It may take me longer to get there, but as long as I reach that point it doesn’t matter. Be kind to yourself, ask for help when you need it, set attainable goals, plan ahead, prioritise, keep it all in perspective.

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