I was given my diagnosis at seventeen, only a couple of months into my second year of A-Levels. At first it didn’t seem as though anything was wrong; my social life was great, I was excelling at my subjects and I had already picked the universities I wanted to apply for. The future was looking shiny and bright – then I started to get tired. It was a bone-deep fatigue that weighed me down and mutated into aches and pains that kept me away from my studies. I ended up receiving the official diagnosis after I collapsed and ended up in hospital for two months – lupus. Systemic lupus erythematosus with type four nephritis, to be exact, along with a whole host of other problems that still plague me to this day.
When I started at The University of Keele, my body was still trying to heal with the assistance of some pretty intense medications. I was constantly tired, achy and slipped too easily into self-pity because of steroidal weight gain. My self-confidence was non-existent, partly due to my friends back home having cut contact with me after being faced with the reality of my illness, and partly due to the encroaching mental health issues that would reveal themselves in my second year. I hoped for a fresh start, for my illness to miraculously hide itself away and for the ‘old me’ to return.
Perhaps I was unlucky with timing, having had very little time to grieve once I had the capacity to do so, forced to struggle with a brand new long-term illness alongside a brand new situation. I found help in my friends, who I’m currently living with as we prepare to take on postgraduate courses, and in my family over Skype calls and Whatsapp messages. Never underestimate the importance of talking things through with loved ones: it’s perfectly fine to complain to your mum on the phone because this one essay is taking forever to write because you just can’t clear the fatigue fog from your head, or to tell your housemates to quiet down because your body needs an earlier bedtime than most.
During the three years of my undergraduate degree I was diagnosed with osteonecrosis, had two hip replacements, was diagnosed with severe depression and anxiety and developed chronic fatigue syndrome. Through it all I had the support of my friends, my family and the university itself; arguably my biggest reason for worrying was being unable to complete assignments to a high quality because life had pitched me a swerve ball, but the university’s disability team helped put my mind at ease.
After struggling with completing assignments on time and riddled with anxiety over having to skip lectures, I decided to reach out to the dyslexia and disability support service offered by Keele. As I didn’t have any problems that could be directly helped with services they offered – such as providing students with scribes, or ensuring wheelchair access was available – they ensured I received help in other ways.
The most invaluable thing they were able to do for me was ensure my applications for extenuating circumstances were accepted. This meant that if I was unable to finish an assignment by the original deadline I could suggest an alternative deadline to my tutors, or an alternative to the assignment itself. They also notified my tutors and lecturers that I may be absent from seminars and lectures due to health issues so they wouldn’t question me when I emailed in. This was particularly helpful when my anxiety presented itself in second year and communicating became difficult.
I would highly recommend speaking with any disability support available at university, even if you don’t think you qualify – despite being unable to give you anything to help, they will still be able to offer advice and be there to answer any questions. The least you can do is make them aware that you have a long-term illness and that you may one day require some extra help. Once it’s all in place and they know of you and your illness, there are no forms to fill in when you approach them on a bad day with a half-written assignment due in tomorrow. For any postgraduate students, I say the same. If you are attending the same university where you completed your undergraduate degree, remember that most places will require you to sign up again after graduating.
The most important thing to take away from this is that students with long-term illnesses should not assume that their university experience is going to be drastically difference from anyone else’s. Complain to your friends, get teary over the phone to your family, go to your doctor and speak to professionals. Just don’t assume you have to deal with your illness alone. Speak to your tutors as well, or at least your personal tutor. Once they know why you’ve been absent, or why you struggle with certain things or at certain times, they can work with you to ensure you don’t have any more hurdles to overcome than their other students.
Sophie is an English graduate about to begin her Creative Writing MA at Keele University. She also writes book reviews for an independent publishing company, North Staffordshire Press.
Note: 'Student Blog' pieces highlight the student perspective on issues relating to ProtectED. Consequently, this article reflects the views of the author and not ProtectED.