University and Disability: Not Having a Diagnosis

Part One of a three-part LUNA Project Series, by Rachael Banks and Ally Lloyd

When Rachael said she wanted to write about the experiences of Disabled and chronically ill students at University, looking at what was working well and more importantly what wasn’t, I jumped at the chance to write alongside her. Even just from our own experiences we felt we could write and write and write, but wanted it to have a stronger foundation and so reached out openly to anyone who may want to talk about their experiences. We were overwhelmed to find that so many others had similar, yet incredibly diverse experiences. Therefore, in order to do them all justice this has become three pieces. Firstly, introducing the series and looking at what it is like to try to access support without a diagnosis. Secondly, what it is like to have a chronic illness or disability while in the context of a Medical School. Lastly, we will look at the experiences and recommendations from Disabled, Chronically Ill, and Neurodiverse people, in how to make this system actually work for us.

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To start off, we wanted to share the experiences of two of the people we talked to, who live with undiagnosed chronic illnesses: Mirren and Eva. Eva’s health problems remain undiagnosed, and Mirren has received a diagnosis but reflects in part on the year for which she was at university without a diagnosis. The experiences they share offer a window into the challenges faced by the many, many people who live with undiagnosed chronic illnesses. Trying to do university with a disability or chronic health condition is hard enough (the other five peoples experiences that will be shared across these three parts testify to that) and it is not just that the challenges of having an undiagnosed illness are added on top of these, but rather each exacerbates the other.

This is largely because of the difficulties in accessing support. The internal struggles and frustrations of not having a label and therefore not having the language to communicate with, a community to take advice from, or validation, are then pushed to breaking point when you are faced with gatekeeping in order to receive the support you need. Mirren and Eva share their experiences of this compounding below.

Mirren

I’m going into my third year at Glasgow Uni studying English Language and Linguistics & Gaelic, and I have FND which for me causes seizures and lots of other neurological difficulties, like ‘brain fog’, fatigue and memory issues. I was coming to the end of my second year of study when I finally received the diagnosis, and my illness only started when I came to University.

Initially coping with uni wasn’t a worry, as I wasn’t ill when I first started Uni, but within about a week I was worried I might have to drop out (which was a nightmare!) I’d wanted to go to Glasgow Uni for so many years but as soon as I arrived I started having issues with my sight, memory, and concentration, all of which are pretty essential for study.

The Disability Support team has been pretty great, my disability advisor was so kind and understanding, without being patronising, and the extra support I’ve received (exam resits, extended deadlines) really put my mind at ease. All my lecturers and tutors were made aware of my situation so if anything ever went wrong I could get help quickly without having to explain my whole situation, and the Uni also provided free taxis home in the event that I had a seizure on campus. This made me much more confident about attending classes as I didn’t have to worry about getting home if I became ill.

For the most part, I think the Uni were pretty good in terms of being aware of what was going on for me, but I did have a couple issues when trying to apply for an essay extension. I’d been in hospital when the essay was due and had to spend a lot of time recovering at home, so finishing the essay wasn’t high on my list of priorities. However, when I tried to apply for the extension I kept being asked for more and more proof that I’d been hospitalised and felt like I was being second-guessed constantly. At the time my illness was undiagnosed so being questioned by both my doctors and my lecturers about how sick I was obviously wasn’t a great situation for me to be in, and I ended up dropping that course about a month later.

In terms of better support, I think there is a need for a wider understanding of what effect chronic illness can have on your mental health and your motivation to attend classes/complete coursework. Chronic illnesses and disabilities, especially those that aren’t visible, are a bit like an iceberg. The parts that other people see are only the tip of it, there’s always so much more going on below the surface. I also think that the disability service should be more vocal in offering counselling sessions to those registered with them or at least showing that they are available as it's so easy to put mental health to one side when discussing physical health.

Eva

I am currently a second-year student studying Spanish and Psychology. I have had stomach problems for the last four years, resulting primarily in nausea, vomiting and stomach pain as well as other symptoms. I first developed these symptoms when I went into my 5th year of Secondary. It certainly impacted my studies though as before these issues came on I had wanted to go into medicine but since they started in my Highers year I did not receive the grades necessary and in fact took a year out after University to do extra Highers to get into my current course. My school knew about it but I did feel that, especially in my fifth year when I was missing a good number of classes and stressed due to not being able to know the cause of my sickness, there were not many measures put in place to support me. I’m not so worried now about coping in university as I’ve gotten more used to working with and around my symptoms. It's only really a big issue when I have a bad flare up but the day-to-day discomfort of it has gotten normalised for me even if it’s not enjoyable, but I do know the impact it can have on my studies. I’m not sure that any of my teachers really knew the full extent of my problem and I don’t know if there was any way to reflect the impact of this on my results which were lower than expected. As there is no treatment for my illness that helps, nor even a set name for it, I find it is tricky to get support as I am unable to define to my educators what my problem is, only the symptoms.

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In many ways, the experiences and challenges faced when trying to manage uni and access support with an undiagnosed chronic illness are in many ways more acute versions of the challenges anyone with a Disability or long term health condition - mental or physical - experiences. The need to constantly prove yourself, having to explain yourself to people over and over again, the effect that it has on your mental health, and, ultimately, the need for support that is right for you. Instead of having a cookie-cutter approach for everyone, communication and patience is key to supporting people with chronic illnesses, especially those that are undiagnosed. Ask how you can help them, what they need. Listen and don’t undermine the differences of experience but have a plan in place for people, a structure that they can see is there and help them navigate it. Rather than an attitude of they can get on with it themselves, read a few information leaflets and they’ll be good, we need a structure that is able to be flexible and continuous, with enough check in’s and close support to be able to know when this is needed.

(Originally published 12/10/20)