University life with axial SpA

Emma’s experiences of university life with axial SpA

My name is Emma. I’m 20, I’m a student and I have axial spondyloarthritis. I got diagnosed at 18, after 6 years of symptoms. I study Management at university, which I really enjoy, and I have learnt so many useful tools that I can apply to different aspects of my life.

Choosing a university that supports students

When looking for universities, apart from looking for an interesting course with a good reputation, I researched how they support their students.

After I accepted my offer, I got into contact with the support services and arranged an appointment to set up my disability access plan, or DAP. This meant that the extra support I needed was automatically shared with my lecturers. If I had a flare up and it meant I needed to request an extension or not attend a meeting, my DAP would help explain my situation for me. This has been a huge help in my university journey so far.

Managing my axial SpA during my studies

One issue I struggled with massively at the beginning is the long periods of sitting down. I learnt to deal with this by getting involved in different activities, for example, joining a sport or the gym. This forces you to schedule time to move around, in the same way that you schedule time to sit down and study.

In lectures themselves, I make sure I always walk around in the break, or even try to stretch when I’m sitting down. If I really can’t sit through a lecture, I position myself near an exit so I can leave easily and quietly if I need to.

Prioritising my health

One way that I manage my axial SpA at university is by pacing myself.  If my body isn’t feeling up for a night out, or if I need to skip a lecture and have a lie in, then I’ve learnt to listen to my body!

Although my studies are important, my health is more important. No matter how stressed I am, and how many deadlines I have, I do not neglect my health. I have to admit that I didn’t always do this in my first year, and actually ended up in hospital a couple of times!

I’ve learnt not to listen to peer pressure! It is likely that they don’t understand my unique situation. I know myself best, so I listen to myself before others.

Accessing healthcare while away from home

It is important not to be out of reach of help from healthcare professionals, especially when you’ve moved far away from home.

I transferred my care to the hospital local to my university so I could continue my care without having to travel hours back for every appointment. I would highly recommend this – although it is likely that there will be a big wait to do this – so make sure you plan this transfer a while before you move to uni.

If transferring hospitals isn’t an option, it’s important to prioritise those potentially long trips to your hospital, even if you’re tired or have lots of work to do. However, if you really can’t make the appointments, do not be scared to contact them and reschedule the appointments.

My top advice

It is daunting to go to university and surround yourself with people who might not understand your condition. However, I found there is lots of support available from the university. And of course, friends and family will get you through any potential hard patches.

I would recommend writing a rough plan on how you think you’re going to manage your condition, and so when it comes to a flare up or a hard time, you can see what actions to take, to avoid feeling overwhelmed and letting your emotions cloud your judgement.

Remember, you know yourself best! If something isn’t suiting you, don’t be afraid to change what you’re doing. There is no right or wrong at university!