chronic illnesses as a student

There are limitations: the life of a chronically ill university student

We recently spoke to Megan, a graduate from the University of Roehampton (previously the University of Surrey), who attended the university from 2014 to 2017 and studied Drama, Theatre Studies and Creative Writing. She is now 25 and works for an international company called Study Group. We had a chat with her about what university is like when you have chronic conditions.

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Did you enjoy university?

“I loved my degree, I loved the academic side of it – I’ve always loved academia in and of itself, and so the degree was amazing. I loved going to lectures, and I loved the lessons, and so that side of it, in and of itself – amazing.”

When you first applied to uni, did you know about your chronic illness?

“Yeah, so I was first diagnosed with one of my conditions when I was 14/15. So my chronic illnesses as a journey started in my GCSE year. In my GCSE year, my attendance was 40% – luckily, as I said, I’m very academic, I really – I enjoy studying, I’m a massive nerd, so my grades weren’t hugely affected in my GCSE years.

But when it came to my A-levels, I had to take three years to do them, and I had to drop one, so I did come out with 3 A-levels and an AS level, but that’s because I had to take one of them in the ‘first second’ year and I took the other two in the ‘second second’ year, so I took 2 years longer to do my A-levels which meant that I came out with the grades that I wanted. Just that, yeah, I took longer. But it was actually good for me, during the 1st A-level year, I thought I wanted to do English Literature, and I was looking at Bath Spa – it was one of the ones I looked at and was really interested in, but during that time where I ended up taking the extra year, it made me realise that unfortunately, I had to stay closer to home, I had to stay closer to family.

So I’m based in Brighton, and Bath was just too far away because of my health requirements, and my hospital and my experience so far with my care were all based here. I realised it would benefit me to try and go to university in London because I’d be close to the specialists I had to go and see in London. I knew I had all of this going on, and it affected the choices I made. To some extent, it limited my choices, but that did kind of make it easier because I only had in the end 2 unis I had to choose from because there were only 2 that did the degree I wanted to do – which were closeby. So I suppose I had an easier choice in that sense. I genuinely see it as an upside – I’m a Gemini, so I can’t choose anything to save my life.”

So what are your chronic illnesses, and how many are there?

“Currently, I have 4, one of which is undiagnosed. They’re not all chronic illnesses, though –  that’s kind of a misnomer. In the same way, I could say everything I have is a disease, but no one attributes that word, they think of a disease like an infection.

I was first diagnosed with my first condition, Idiopathic Intracranial Hypertension. I love rolling it off my tongue and seeing people go blank behind their eyes. So the breakdown of it is idiopathic means they don’t know where it came from, intracranial in the skull, hypertension – lots of pressure going on. In my case with the cerebral spinal fluid, which is the fluid that sits around and in your brain in the little pockets and goes down your spine and stops your brain from shaking about in your skull basically.

They don’t know why but my body produces too much of the fluid or doesn’t let it go, so I get a build-up of fluid – which down the line can cause death, but the bigger problem is it can cause vision issues because it pushes on your optic nerves. I have constant floaters and small vision issues as a result of scarring. When I first got diagnosed, the treatment plan was a lumbar puncture which is where they put a needle into your spine and drain the fluid out, and I had one every 6 weeks to 2 months – hence why my attendance was so low. I had a device called a lumbar peritoneal shunt fitted, which is basically a garden tap and sprinkler system inside of me, so I have a tap in my spine and a little device that lets little bits of fluid out constantly. I had that fitted at 18, during my first A-level year, and because I had that fitted, I had a bit more control over my life, and that meant I could stay away from home, live at uni, which I wanted to do.

Leading on from that, I have chronic migraine syndrome, and this started because of the amount of pressure in my brain and the pressure skyrocketing and dropping. Essentially I have a migraine 24/7. I’ve had one now for 12 years. I have days with worsened symptoms and days with better symptoms, so that affects everything. I have fatigue, and some days I’ll have a worse head, some days I’ll have a better head and it caused a lot of symptoms that affect me throughout the day.

In the second year of uni, I developed fibromyalgia, which is a condition where you get widespread pain in different forms and it can manifest in different ways. Some people will experience a certain type, others will experience other types of pain. For me it started in my thighs, it felt like I had been running, hardcore marathon run, and I’d woken up the next day and my legs were screaming at me. I had that and it just started and got worse, and then I had other symptoms that came on and developed because of fibromyalgia.

And then, recently, I’ve developed tics – a tic disorder. But that started after uni.”

How have these conditions affected your studies?

“I think, obviously, I’m unlucky in some senses that I have this, but I was fairly lucky in that it started before my hard studies began, so I didn’t learn to do it one way and have to relearn. Right from the get-go, I was having to adapt and learn how to do this with my conditions and symptoms. The biggest one probably would be fatigue and then pain as a distraction – I would be in lectures at uni and would sometimes be in so much pain that I was dissociating and wasn’t in the room because the pain was so intense. And if I took painkillers that were strong enough to dull the pain, I’d get common symptoms, one of which is dissociation.

Dissociation
Source: NAMI

That directly affected my studies by stopping me from being able to be present and taking in information in lectures, and if I had a particularly bad day, I couldn’t go to lectures. And if I had work due, I had to be a planner, and I’m not a planner, I’ve never been a planner – I am last minute lady, I’m so bad at planning which in my 1st year was okay because it just pass/fail but later on in my 2nd or 3rd year I had to screw on my head. Because if I left it to the last minute, what if I had a really bad migraine? If I had bad symptoms, the work wouldn’t get done. And it was something that I had to make myself think about. It wasn’t an easy thing.”

Did you feel like you had to ration your energy?

spoon theory
Source: Scary Mommy

“Yeah, there’s a theory in the chronic illness community called the spoon theory. The idea is that you can visualise your energy – say I have 10 spoons to spend, 1 to brush my teeth and get ready, 2 to go to uni, etc. You might have more and fewer spoons depending on the day, and sometimes in the middle of the day, you’ll think you have all these spoons and then all of a sudden, no, no, you have to go and sleep. Whilst at the time I didn’t know about the theory and wasn’t aware of the community, subconsciously I was doing that, I was having to ration and having to make myself think about it. Like remember last week when you left the work until the last minute, and it was really crap because of it? Yeah, don’t do that again.”

So it was a lot of learning from mistakes?

“Yeah, oh god yeah, I know that’s the case for anyone at university, but there’s like an extra layer when you have a chronic illness. Like it’s so unpredictable most of the time, some people it may be more predictable they have become more familiar with their symptoms, their triggers, but for me, I had no idea.. it had only been a few years since I had developed my symptoms, but also it was only a year since I had my shunt fitted and having some more of that normalcy and so thinking I could do a lot more than I could. There’s a lot of self-discipline which you have to learn and adapt to, which is more than the non-chronically ill student. I have to be aware that I can’t always take care of myself. I have to have a really strong support system which I have to be able to rely on when I can’t. I learnt to be adaptable, and I learnt to create my own safe space.”

How did all of this affect your social life at university? 

“It is so so hard to be a uni student and be chronically ill. I loved my studies, I loved academia, but the problem is, people can suck, and you have to deal with people. It was a major, major, major effect on my social life. You know they show you those pie charts, and ¼ of your life should be spent on your studies, ¼ of your life should be spent on being social, yeah – no. With the time, energy and resources that I had, I had to choose one or the other. I had to choose to be sociable and to go out, my studies, or my health. I had those 3 things, and I could do 2 at any time, and the other one would be neglected.

Coincidentally in my first year, I became good friends with a housemate that didn’t drink. It meant that in my first year, I was pretty much sober. I’m really glad that happened because it meant I had an entire year to get used to life at uni before messing it up by adding alcohol into the mix. It meant I could socialise, but it didn’t push me over the edge, and I didn’t suddenly go the whole hog all the way and wreck my health. That first year I was fairly sociable, I got involved in everything, and my health was doing fairly okay – I still had symptoms and migraines, but I felt normal.

In my 2nd year of uni, not only did me and my friend both pick up drinking, but I had a really bad episode of depression that came in, and my health got worse because they’re interlinked. So my health was affected, and my social life started to become very hard to handle, and that meant my academics got worse. I started to associate my social life with being something very hard to deal with and decide what I want from.

I was also on a lot of medication in that year, and I think something people don’t realise when you’re on medication, you don’t know how that’s going to react with alcohol. I was trying a different medication every 2 months in my 2nd year – I didn’t think about the fact that I was taking medication that changed my heart pressure and the way my neurons fired, and I added alcohol to it! I didn’t know what my tolerance was, I would get extremely drunk one night from like 3 drinks and would then feel awful the next few days, and that would affect my health. Meds can play with your tolerance, and it’s kind of frightening!

I had a few experiences where I would blackout or not remember the night – and I had only had a few drinks, but it was because of the medication. In trying to act like a normal uni student… I couldn’t. And I look back and laugh that I thought I could, and felt like I had to act a certain way.”

Did you have any experiences which have stuck in your mind? 

“Because I had health problems, I had DSA. So I got extra time, and I also got extra time for coursework and essays so I could just push back the deadlines if I needed to. And it was really great and really useful, and the sad part was that I needed that. But that also meant that I just felt like I was an idiot because I felt like it was my fault that I didn’t get the work done because I was the weak one for not getting it done or thinking and sorting it out beforehand.

No one ever made me feel embarrassed about asking for more time, but I still felt embarrassed. Other coursemates would be getting extensions because they’d been drunk, and I’d had a migraine the whole time – it didn’t feel like an acceptable reason to not get the work done. There was so much shame tied up in the fact that I was incapable of doing the work and being normal, which wasn’t fun, and I came out of my degree with a 2:1, but even now, I think it wasn’t good enough. I could’ve got a first if I wasn’t ill or if I had tried hard enough. It’s this chronic lack of self-confidence because I’m not defeating my chronic illness.

I felt that I was never meeting the expectations. I’m still working on that now, but that was something that the beginning of accepting it began at uni. During my uni, I never accepted it, I never realised that was what I was feeling.”

Any advice you’d give to students working, particularly during the pandemic?

“I have so much sympathy for anyone working and trying to be self-motivated right now. But one thing that nobody realises, so many people have benefitted from the pandemic in the sense that it is much more accessible for students now. When I was at uni, if I missed a lecture, I missed a lecture. And sometimes my brain was fine, but I couldn’t make the move from my bed to the kitchen, let alone up the road to uni.

Whereas now, a lot of people are able to go to uni. Students are able to talk to and communicate with people who aren’t able to leave their house. You might have a chronically ill person in your house who is able to be present now. Also, we all know people who are shy, who won’t speak up in a lecture, and now they can just type a message – and I think it’s really helpful, and I think it would be an awful thing if we go back to normality and this step forward is just erased. And I think that not only chronically ill people should push for it, you know? Like if you’re really hungover!

Obviously, there are many issues to the pandemic. You’re at home, and you might be isolated, you might not have moved to uni… we are a lot more isolated than we were previously, but the current generation is the online generation! We are always communicating on our phones, and we should use that to our advantage. We need to become comfortable with phone calls, video calling, etc.! Utilise the fact that it is so much easier to message someone than walk up to them in a bar. I think it’s awkward and so cringe when people suggest online teambuilding and stuff, but get involved with it, make it funny, if you just enjoy all of the experiences that they’re suggesting you do. You gotta do it, and it’ll benefit you more if you try.”

What are 3 things that you wish you could tell yourself in first year? 

  • Accept that you’re chronically ill. There are limitations because of that, they’re not good or bad, they just exist.
  • Look for people who don’t need to be drunk to enjoy your company
  • Involve yourself authentically

What advice would you give people who have chronically ill friends? 

  • Be there
  • Don’t make your friends feel guilty
  • Check-in on your friends

What are you doing now?

“After uni, I was very tired. I know a lot of people experience post-uni fatigue, so a lot of people go home. And that’s what I did. I moved home to just kind of decompress – it was very important for me. I ended up having a complete breakdown, like a shave your hair level breakdown. I didn’t know what I wanted to do. I knew that I wanted to work because I hadn’t had money for 3 years and I knew I wanted some money. I liked the idea of having a job, I liked the idea of that being something I could do.

I currently work with Study Group, which provide access to International Students for higher education. I work for the customer services side of that, I do a lot of writing, researching and explaining. I love researching stuff, and that’s currently what I do with my job. I get someone asking me what a degree is and all the details, and I answer.

When you have a chronic illness, having a stable job is a big deal. I have a flexible working contract, I work 4 days a week because that is the absolute maximum I can work. The pandemic has meant I’ve been able to work from home which has made my life 200% better. I don’t feel like I did at uni where I can’t go in, and it’s my fault – if I have a migraine, I don’t work and make it up.

There were a lot of mistakes that I made, and I’ve actually been able to recognise them. I can’t physically work 5 days a week, and that’s okay. We live in a society that says we have to be little worker bees, and I can’t do that. And I had that at uni, there are the typical expectations of staying up all night, and I can’t do that! I had 2 essays that I did at uni that were barely passes because I couldn’t stay up late. I’ve come to accept what I can do and that I work 4 days a week, and it may be lower money, but that’s okay.”

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