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By Daisy-Mai Pulford
Being a young person with a chronic illness is a challenge, filled with a feeling of dysphoria and frustration towards your own body that in my experience starting University and entering student life only emphasizes. With a longstanding diagnosis of Polycystic Ovary Syndrome (PCOS) and a brand-new diagnosis of Psoriatic Arthritis in my collection of autoimmune diseases, I started Cardiff University at the age of 18. I was already struggling with the new ‘chronically ill’ identity I was having to adopt at such as young age, I felt like I was thrown in the deep end when it came to fitting in amongst a group of strangers also trying to pave their way through life as a fresher. With a fear of being left behind if I didn’t keep up with social events or nights out, I went above and beyond in ensuring I attended every party, club night and social I was invited to. Of course, by doing this I met new people and made amazing memories but inevitably I faced massive burnout and quickly learnt that the hangovers I experienced would last for days rather than just one morning. I cannot speak for every chronic illness, but certainly with autoimmune diseases, the lack of warning and unexpectedness of a flare up is a draining process. From being functional and productive one day to waking up feeling like you’ve been hit by a ton of bricks the next morning is scary when you have lectures to attend, reading to do and assignments to write. I’d find myself spending the evening trying to squeeze in all the self-care I could, in the hopes that I would wake up the next morning feeling better so I could work through some of the tasks on my ever-growing to-do list.
The mountain of university work that looms over students is only intensified when chronic illness is involved, and a large contributor to this is the issue of accessibility. Whether it is access to physical materials, in-person learning or online content, every chronically ill student learns differently and requires different accommodations. The ‘Corona virus’ pandemic really highlighted the individual needs of chronically ill students and proved that such accommodations could be met by universities with online lectures and blended learning. However, online learning is not always the most suitable learning style for every chronically ill person. Personally, I find online material difficult to engage with and almost impossible to concentrate on, especially in my home environment, the temptation to slip back into bed and watch my lectures whilst curled up is far too great for me and my constantly aching body. Not to mention those who experience difficulty with the actual format of online material, such as those with hearing and sight impairments, who may find their needs are not being met by teaching staff for a number of possible reasons. On the other hand, the physical effort required to attend in person teaching often feels like a monumental task and results in missed classes. With an unpredictable ailment such as a chronic illness, there is no winning situation when it comes to learning style as our needs change day by day depending on our health and what works one day may not be helpful the next.
Another obstacle I faced, especially in my first year of University was the expectation of academic independency. The jump from being constantly monitored and told what to do in Sixth Form to being given learning materials and an essay question and being expected to just get on with it, was one that took me some time to get used to. As a person who would prefer to be told what to do every step of the way when it comes to assessments and studying. I found this independence a struggle, which was made worse by intense brain fog and lack of concentration.
‘From being functional and productive one day to waking up feeling like you’ve been hit by a ton of bricks the next morning is scary when you have lectures to attend, reading to do and assignments to write’
Also, relationships within University are hard to maintain, especially when chronic illness is involved, the overwhelming feeling of guilt associated with not being able to keep up with social activities and the fear of missing out is enough to make you feel lonely even when you’re surrounded by friends. A common concern shared by chronically ill students is the feeling that you cannot identify as both chronically ill and a student, if you enjoy partying and socializing, you are subverting your chronically ill identity or if you avoid socializing you aren’t living up to your student persona. The blending of both identities is a hard balance to find without overexerting yourself. The key is to listen to your body and find your limits, being a student is the perfect time to experiment with what you can and cannot do whilst maintaining functionality.
‘A common concern shared by chronically ill students is the feeling that you cannot identify as both chronically ill and a student, if you enjoy partying and socializing, you are subverting your chronically ill identity or if you avoid socializing you aren’t living up to your student persona’
Having a chronic illness does not have to define you or the lifestyle you choose to live, embracing this identity rather than rejecting or trying to hide it is incredibly freeing. There are many ways this can be done, and it is mostly a journey of self-acceptance, but the following are some tips I wish someone told me in my first year of university:
-Firstly, it might be helpful to make friends with other chronically ill students, as those with chronic illnesses understand what you are going through, and you may find it helpful to support each other in your journey into university life.
-Secondly, try joining a society that hosts a variety of activities and has flexible membership so you can attend as and when you feel up to it, this is also another great way to make friends.
There are also helpful resources available to you if you ever find yourself struggling, such as your personal tutors and the student and disability support service. Lastly, it is important to remember you are not alone in your experiences and there are others out there that understand what you are going through. Ultimately, you should be proud of yourself for working through the obstacles you face and your dedication to getting a degree despite the challenges of your chronic illness.