233/365 -Stories of people with myasthenia at university – part 3 getting diagnosed in first year

When Celestine Fraser went to university in 2013, she couldn’t wait to get started and enjoy all of the fun and experiences that students are meant to have. But her symptoms of myasthenia, which she hadn’t been diagnosed with at that point, hit her hard. At this crucial point at the beginning of her time as a student, her university failed to support her, even saying:

‘students don’t drop out unless they have cancer’

She said:

‘Soon after starting university, I became extremely ill with bad fatigue and after a few weeks of term I could hardly walk. The uni was totally unsupportive, doing next to nothing to help me despite it’s supposedly supportive college system they have there. 

‘I was even (brutally) told by the head of my subject dept that ‘students don’t drop out unless they have cancer’. 

Celestine left, planning to go back the following September, however the university again failed to support her so she cut her losses and joined another university elsewhere. 

‘I thought it’d be easier to cope in a big city with public transport/ taxis etc so in Sept 2014 I started again at a London uni, studying English Lit with Film.’

In her second term, last year, her diagnosis changed from Chronic Fatigue Syndrome to MG. 

‘I managed first year and am going into my second year in a couple of weeks! It was super hard to cope, but it is possible. I managed to re-arrange my lectures and seminars so there weren’t too many in a row/ each day. 

‘The Disabled Student’s Allowance provided me with a certain number of taxis to get to and from classes. I also got essay extensions and extra time in exams. I got through the year and made some wonderful friends but my uni experience was far from typical.’

Celestine had to go home every weekend to rest and recover from the previous week. After classes, she’d go straight back home to bed and during MG flares, she would miss several weeks of classes. Her mum helped with the shopping for the whole week and re-stocked her fridge and she hardly read any of the books for my course as just attending classes wiped me out for the day. 

‘Despite all of this, I became a master at bluffing my way through seminars, despite having read none of the texts.’ 

 Thankfully, Celestine’s new university has been supportive and kind. And she’s figured out a few tricks for getting by. 

She said: ‘The academic side is definitely difficult and every day was a huge battle but it is possible, so have hope. You can get by doing the bare minimum, despite what the lecturers try to tell you.’

 I’m just amazed that unis can treat disabled students so differently! 

The social side of university is where many a student tale comes from, but Celestine didn’t manage a single night out last year.

‘I definitely felt I was living a slightly different life from everyone else (in bed by 9pm in freshers’ week!!) but I doubt I actually, really, missed out on much. 

‘My symptoms get worse when I drink, but the main thing is I couldn’t stand up/ dance for any length of time. The main thing I found difficult socially was being honest and up front with the people I met. Most of us with invisible illnesses don’t ‘look’ ill or disabled, so people find it hard to actually believe you when you say you can’t join them for drinks/ go shopping/ etc because you ‘have this muscle thing’. 

‘Students are mostly young, so obviously you (wrongly) assume your contemporaries to be fit and healthy. MG certainly killed some of the spontaneity and fun of being young and at uni in a big city, but it doesn’t and shouldn’t stop you from having genuine and meaningful friendships.’

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