Monday, 11 May 2015

Biggest Achievement: University and a Chronic Condition


I graduated with a BA (Hons) English in 2012 and then a MA English in 2013; they will forever be up there with my biggest accomplishments. Above is my favourite picture from my Masters graduation with my boyfriend; why are the most ridiculous photos always the best?

I went to Edge Hill University, started at the age of 22 and was terrified because I didn't know how I was going to manage my condition and keep up with student life. I can't hold a pen, I can't sit at a computer for long, I can't concentrate, I end up in agony if I'm sat in a certain position for more than ten minutes, if fatigue is kicking in - I need to sleep, etc etc. There were a lot of cons; however, they were vastly outweighed by the fact that I love to learn and I wanted a degree (or two).

As soon as I applied at Edge Hill, I made enquiries regarding support for disabled students and was given an appointment with the Inclusion Team. I was designated an advisor who I went to with any concerns I had; he helped me apply for Disabled Students Allowance which helps pay for any specialist equipment needed, non-medical helpers, travel and any other costs related to my disability. I received Dragon NaturallySpeaking (a speech recognition software) so I didn't have to type all my essays, an ergonomic trackpad mouse and keyboard which helped my hands a lot, laptop stand, bookstand and a light, portable lumbar support for sitting in lectures and seminars. I also was awarded the two best learning facilitators anybody could ask for, they stayed with me for my whole four years and I would definitely not have achieved my degrees without them. They came to my lectures and seminars and took extremely comprehensive notes, then typed them up and emailed them to me the same day. I can't even begin to tell you incredible that was. On days I was feeling awful and there was absolutely no way of concentrating, I didn't miss out on anything as their notes were so thorough. If I had any worries I spoke to my LF's and they discussed it with my Inclusions advisor. Exam modifications and alternative assessments were arranged, so if I sat exams I could do them at a computer with 25% extra time or I could write an essay instead. As I studied Literature, the exams were mainly essay-type questions so my extremely understanding tutors allowed me to take the paper home and write an essay, usually to be handed in the following week. I was assisted throughout my whole time at Edge Hill and if it wasn't for the support put in place, I wouldn't have been able to cope.

The relationships with my tutors helped a lot too, if I was in an enormous amount pain or highly fatigued, they appreciated that I made the effort to attend but didn't urge me to contribute to discussions. I liked to be involved and was quite vocal in seminars so even when it felt like my shoulder may fall off, I'd find a kind-of-comfy position (usually leaning in a very strange way and holding my shoulder) and participate. If it got too bad, I excused myself and headed home. I probably didn't do that as often as I should have, but I loved my subject and didn't want to miss anything.

My four years at University was difficult, not only because of the chronic pain, but the stress, the non-stop work, the walking from lecture hall to seminar room, the carrying my bag and books, the sitting at the back of the room so nobody could see my muscle spasms. But it was worth it. I absolutely loved being on campus, I made some amazing friends, I have two degrees and I wouldn't change a thing. Granted, I know way too much about the Victorian Freak Show and transcendental medicine but it changed my life. I like to think my knowledge of the nineteenth-century makes me a little bit more interesting. My dissertation supervisor was so encouraging and welcomed all my wild and macabre essay titles, she wasn't shocked when I handed her an assignment on the 'Victorian Celebration of Death,' because it was something she expected from me. I went on to study for my Masters because of her; she introduced me to Victorian Literature and I will forever love it.

If you're disabled and think that University isn't an option, I assure you that it is. There is so much help available that I had no idea about until I was introduced to the Inclusion Team. I'm not saying it will be easy, because it won't. You'll struggle, you'll want to give up, but stick at it because there is nothing better than hearing your name being called out at your graduation ceremony (I nearly cried).

I'm more than happy to offer any advice or answer any questions, please get in touch.

Sarah x


6 comments:

  1. Great post Sarah, I have been debating a university course for a long time. I am housebound with Ehlers Danlos and the thought of the uni process gives me great fear, but like yourself I love the concept of learning. I had to leave school early due to eds but I want to still achieve if I can. Thank you for putting me more at ease with looking into courses for the future :) wishing you well and congrats on your degrees. Nancy :)

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    1. Thanks so much for your comment, Nancy. A degree or any qualification is definitely achieveable with the Open University if you are housebound. I did three courses with the OU and the support is available, as is the Disabled Students Allowance. If you want to chat about any of it, I'd be happy to :)

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  2. What an achievement! I had no idea when I went to Uni that I had a chronic illness. That was back in the '90s and finally, aged 41, I've finally found out that I have Joint Hypermobility Syndrome/ EDS. No wonder I had difficulties holding down work for more than three years at a time due to sudden bouts of illness.
    So now I work from home using my degree in Design Representation to make Steampunk jewellery/accessories and run a Steampunk international art project. Things I can do at my own pace and enjoy.
    Wishing you all the best in your future endeavours!

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    1. Thanks so much :) I really appreciate it. That sounds amazing. Good luck to you too x

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  3. So proud you make me more want to complete my achievements x

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