How the Disability Support Team helped me with my fibromyalgia

By Tegan Cooke a current Fashion Textiles and Knitwear Design NTU student

It’s undeniable that going to university is a hugely challenging undertaking – moving away from home for the first time, balancing studies and a social life, and dealing with minuscule student budgets, are all steep learning curves for the majority of freshers. A chronic illness can make this transition so much harder.

As I progressed through sixth form, I began to struggle with joint pain, fatigue, and issues with my memory and concentration. I was in the process of getting help put in place at school, when all of a sudden, school was over, and the world was in lockdown. I was diagnosed during that first lockdown with fibromyalgia – a chronic pain condition that is under researched and not well understood. Essentially it is a condition that is caused by the central nervous system confusing signals – where the nerve should communicate an ache, my nerves tell my brain I am in pain. When I should be slightly tired, I am exhausted.

I went to university that September with all the usual worries, but also concerns about this new condition. I hadn’t worked out how to deal with it in an educational setting yet, and due to social distancing, the support I received from physios and occupational therapists had only been over the phone, not in person. I didn’t really know how to ask for help initially, so for a while, I struggled on my own. My parents and friends were incredible supports, but they were all back home and I didn’t know who to turn to in Nottingham.

My sleep quality massively deteriorated due to the noise from student halls, so I spoke to pharmacists in Boots for some tablets, then went to the doctors for something stronger. I would recommend every new student sign up with the university doctors; put simply, I wouldn’t have managed to do anything at university without their support.

After a while, I searched online for NTU student support, and found the Disability Support Team. By this point, I felt like I was always falling behind my peers. It’s very easy to compare yourself to others, but I had to acknowledge that the condition I had wasn’t going to go away any time soon, and I had to start to learn to manage it properly. I contacted the support team and received a prompt response and appointment time. All I needed was to fill in a form describing my condition and my daily experience, then support this with a letter from a doctor to confirm my diagnosis.

My appointment came in the third lockdown, and I still kick myself for not asking for support earlier, because the appointment enabled me to have so much help. The team member I spoke to was understanding and supportive; Jayne listened to what I had to say and didn’t disregard me in any way (which can be a common problem in medical appointments). Together we created an Access Statement. This statement outlined the struggles I faced and what adjustments needed to be put in place to help me to thrive at uni. This statement is highly personal to each student and their needs. For example, I get authorised absences, so if I have a particularly terrible sleep or I am in too much pain, I am allowed to miss lectures and workshops, no questions asked. These adjustments allow me to prioritise my health, which then enables me to do my best work and have a happier time at university.

As well as completing my Access Statement, I was advised to apply for the Disabled Student Allowance. If I’m being honest, I didn’t think I was ‘disabled enough’ to access any further help. I thought that my condition wasn’t severe – I wasn’t in a wheelchair, I hadn’t lost a limb, I wasn’t really sick in hospital. But Jayne reminded me that my fibromyalgia was a real issue that I didn’t have to struggle with on my own, and what I was experiencing was valid. With this backing, I applied for the DSA, which is a government grant designed to support students with disabilities to thrive at university. I had a consultation with a member of the DSA team, who also listened to me, and recommended so many different areas of support, from a custom-made chair, to computer software for notetaking and reading, to ergonomic accessories (which help improve alignment and posture, ultimately easing pain in my joints). Before the appointment, I thought I could probably get a tram pass, so I had free transport around the city, and maybe a footrest for under my desk. I ended up with over £3000 worth of support. I was gobsmacked. There were some pandemic related delays, so I mostly got to utilise my equipment in my second year. The difference was huge. By advocating for myself, utilising my existing support, and moving somewhere quieter, I went from achieving 2:1s and 2:2s, to 2:1s, firsts, and even an exceptional first in one module. I’m excited to see how I can achieve even more next year, now I have support in place and a better understanding of my condition. For all students with disabilities, whether a fresher or current student, my top tip would be to ask for help. Even if you think you don’t need it, or you can’t have it – just ask. You could be surprised with how much help you can get.

For help, advice and resources whilst studying at NTU, take a look at the following for sources of support.

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