I spoke to Grace Bilney, a third-year history student at Royal Holloway who suffers from Myalgic Encephalomyelitis, or ME. Grace was first struck by the chronic illness, often confusingly associated with the milder Chronic Fatigue Syndrome, in 2009, after a bout of glandular fever. What started as intense knee pain soon became something far more serious, but despite the severity of her symptoms it took a full three years before a formal diagnosis was made.
Since then, she has managed to complete secondary school, the notoriously difficult International Baccalaureate, and, despite a great deal of uncertainty originally, complete two years of study at her dream university.
She is always keen to discuss the illness that continues to dominate much of her everyday life, with a passionate and intense focus on dispelling the damaging assumptions and impressions it often sadly entails. She especially notes the ambiguity regarding its pathology:
“ME is a bit of a complicated illness, as it affects every sufferer differently. For me it makes me extremely exhausted, with a weakened immune system, brain fog (confusion, memory issues, problems focusing), joint and muscle pain, and hypersensitivity. Sometimes the joint pain and fatigue can get so bad I struggle to walk, stand, or even sit or lie down! It’s a chronic condition, which means it’s there every day and has been since I was 14. It comes and goes in flares and lulls but is generally always there under the surface! The problem with the illness is its invisibility; it is obviously difficult for people to help you when they can’t see anything outwardly wrong with you!”
As in many cases, for Grace, ME exerts an often debilitating physical toll. However, she notes that the mental symptoms have been particularly difficult to cope with in an academic environment:
“It’s affected every area of my education possible: exams, essays, lectures, seminars, or even the smaller things like working out what day it is and remembering important emails that were sent to me maybe just an hour before! Sometimes I struggle to get onto campus at all but even when I can make it, then my confusion can stop me fully absorbing the lecture or contributing to the seminar.”
With the illness often limiting her natural academic passion and talent, Grace relies on close relations with lecturers, tutors, a department staff, and disabilities liaison personnel to provide her with custom, flexible support through especially difficult times:
“Individual members of staff have gone above and beyond, as well as my department’s administration team. They’ve granted me very last minute extensions due to the unpredictability of the illness, and they’ve understood my need to prioritise different essays over others, without acting like their subject is being personally attacked! The disabilities department here are very nice and make you feel at ease.”
However, she concedes that the more formalised university frameworks sometimes lack the flexibility to deal with an inherently invisible and misunderstood illness:
“I’ve found I have to provide almost constant evidence of my illness from my consultant, which both annoys him and can make me worse if I am already struggling with energy levels. Despite it being chronic and rarely disappearing I regularly need to provide evidence that I am ‘still ill’. I think the exam arrangements, while useful, also highlight the misunderstood nature of the illness. Even within disability departments. For example, in exams I am allowed extra time and rest breaks for my confusion and joint pain. However, if I take a rest break it eats into my extra time so I have to choose between either completing my exam with brain fog or rushing my work, both of which adversely affect the quality of my answers.”
Nonetheless, coming to university as a disabled student has been a positive experience for Grace. Fears of the alienation and ostracisation that she mentions haunted her before university have not materialised, and in the social realm that is so integral to the university experience she has flourished, filling her with new confidence:
“I can honestly say this is the most supported I have ever felt since first getting ill. I’ve found people have grown up and are a lot more mature and empathic towards the illness and what support I might need. My housemates are fantastic at keeping quiet and letting me sleep if I need to, and my friends have been amazing at letting me rest when I need to but also not forgetting about me when it comes to spontaneous days out or parties. I feel like a regular person within a social group now, rather than ‘the ill one’.”
Furthermore, universities, and Royal Holloway in particular, are famous for having almost as many societies and clubs as they do students. Unsurprisingly then, Grace has found an on-campus support group for students living with CFS and ME:
“I have only just found out about the ME/CFS group and I really regret that it’s been so late in my university career. Who I joined I just assumed there wouldn’t be anything for me but after meeting another person with my illness, I was invited to the support group!”
The last two years have therefore been enlightening for Grace. She enters her final year with some advice for students with disabilities entering the university:
“1. Come with realistic expectations: you are definitely going to come across some very supportive and kind people here but you also have to remember that not everyone will be able to understand your situation straight away; let people surprise rather than disappoint you!
2. Keep in touch with the disability department! Even if you don’t need them right now, introduce yourself and pop in for updates so they get to know you and what you need!
3. Sort out your exam arrangements and then check them thoroughly; standing in the corridor outside the offices two days before your exam crying because you haven’t sorted out your access arrangements is no fun at all!
4. If you find you can’t go to that event you’ve been dying to go to, don’t beat yourself up about it! University is a hub of social events and cool things to do so if you can’t do one thing there are always other opportunities.
5. If you don’t have a support group for you particular disability, set one up yourself! The Students’ Union is always open to new ideas for clubs and societies.”
To find out more about ME and CFS, visit the ME Association.