Starting university with a diagnosis, I thought I'd be OK. And then I wasn't OK. Ever.

BeccaShark123

For most students, going to university is life-changing enough to start with.

For me, what came with that was a diagnosis of Joint Hypermobility Syndrome (JHMS). I brushed it off- yeah I had a good few bouts of knee pain over the last few months, and one instance where I had to crawl up the stairs, but I should be ok.

And then I wasn’t OK. Ever.

I remember the day my chronic pain fully flared for the first time. I barley could lift my feet off the ground to walk to the campus doctors. From then on, the pain has never gone away, like I had hoped. Just last week it turns out I also have fibromyalgia, to boot.

I’d already been dealing with mental health issues from being about 15. Anxiety cripples me sometimes, especially around exam period. I still have to load up a phone number of my mobile phone screen, and really gear myself up to hit ‘call’, which then proceeds with me walking round in circles, pacing the floor like a caged animal. 

On returning to college- after a serious bout of depression that meant I dropped out of college at 16 - I decided to google tips for improving memory, because mine is pretty bad. I came across ‘dyspraxia’, and within two weeks I was screened and diagnosed, just after I turned 19. 

The problem with all these issues mainly, particularly in education and employment, is that they are totally invisible. 

For example, it was only in the second year of university, that I’d began to speak in some of my seminars (basically, an hour of anxiety riddled hell or ‘discussion’) because factors influenced by my trinity of diagnoses:

Dyspraxia

No matter how much reading I’ve done, sometimes discussions go so fast that I can’t even process the information 

Anxiety

I become a tongue tied mumbler when in a situation where I am expected to coherently discuss and debate with people. I can’t stand rebuttal, because I can’t think quickly enough due to anxiety panic, and a brain that even internet explorer would surpass

Chronic pain

I’m in pain right now, this seat is so uncomfortable, and the tutor is, most of the time, even lucky I turned up. I’ve been up half the night- painsomnia. I am exhausted, and I’m sure the ‘normal’ students didn’t get up 3 hours before they had to set off, just so they could wash and dress themselves. 

My problem here, is that no one sees these things. Tutors are made aware that I have conditions, but it’s too subjective as to whether they choose to cut me some slack or not, and there’s only so much they can do. 

I’m lucky in the fact that my University’s disability support service has been great with me. My study coach, funded by Disabled students Allowance, is fantastic and I would not be able to do my degree without her.

I see it so often people don’t know about DSA or university’s disability support office: if you have a learning difficulty/disability/illness/mental illness, look into it ASAP- even if it’s early days when your UCAS form is in!

Also, having a good support network is so important- I need to thank my mum and my friends, for putting up with me constantly complaining- it’s a ‘don’t bottle it all up’ cognitive behaviour therapy side affect! 

Disability, and what it does to person themselves, and those who are around that person, should be discussed more.

I’ve seen people treat me differently when I started walking with my crutch, to when I didn’t. I’ve used my disabled badge a dozen times now, and my mum or my friend in the driver’s seat has commented on how people were staring.

I’ve already prepped my speech for the day I am confronted by someone for using a disabled space, or even when I’m next at university- because I look ‘too young’ to be disabled, and I’m currently lacking a wheelchair- because that’s the first thing people think of.

‘Disabled’ is a word that goes so much deeper. When I first got told about Disabled student’s Allowance, my instant thought was ‘I’m not disabled’ because the stereotypical image of a wheelchair entered my mind.

I’m approaching the final semester of my degree now, and I’m currently applying for a Masters in disability studies: something I never would have imagined doing before when I was ‘normal’

‘Disabled’ is a word I learnt wasn’t a negative: as I began to identify with it, the more help I received.

‘Disabled’ is an umbrella under which people with different conditions take shelter.

What is your experience of being a student and disability? Did you know about the funding and support available? Let us know what you think!

Sam_Alumni

Such a great post @BeccaShark123 I think sometimes disability can feel like it will be too much of an obstacle in things like education, so it is great to hear your story. 

I am so glad you got support, I think stories like yours can show people that they can achieve their goals, we just need to know what support is on offer and how to access it.

BeccaShark123

Sam_Scope said:

Such a great post @BeccaShark123 I think sometimes disability can feel like it will be too much of an obstacle in things like education, so it is great to hear your story. 

I am so glad you got support, I think stories like yours can show people that they can achieve their goals, we just need to know what support is on offer and how to access it.

Thanks Sam. I 100% agree. My experience of college the first time compared to the second time when I got help speaks volumes. I never even considered going to university before I took my A levels and I had lecturers who really supported me-- I sent my application for an MA in disability studies yesterday in fact! I keep nervously checking my emails even though they said it takes 6 weeks to process your application haha!

Squigg

Uni was the worst time of my life as hated the course never enjoyed it but end of the day I got a degree.... I couldn't mix in easily but least I'm a hard worker amd gets things done 

Sam_Alumni

Hi @BeccaShark123 how are you doing? Did you get on for your masters?

BeccaShark123

Hi @Sam_Scope I did! I started a couple of weeks ago and I am loving it