Grace admirably shares with us her experience at University whilst battling a chronic illness, offering advice for those on a similar journey.
Being chronically ill sucks. Caring for a body that feels as if it needs more attention, patience and mental resilience than that of your peers sucks as well. On top of this, the external pressure to maintain your mental health and succeed academically in higher education sucks even more. At times it can feel like a perfect storm.
The importance of being ‘kind to yourself’ and championing ‘self-compassion’ are phrases that well-meaning people in your life may repeat in the hope that they will act as a verbal balm to the complex and exhausting situation that many young people attending university find themselves in. According to research from the House of Commons published in 2021, 17.3% of home students in UK Universities identified themselves as disabled in the year 2019-2020. While many chronically ill and disabled students may have observed a major shift in accessible support and accommodations since the pandemic, utilising and navigating these resources is still exhausting and often places pressure on your mental health. For students who become chronically ill or are accessing resources through their university’s disability services for the first time, this transition can be daunting and often extremely isolating, especially if you are doing this without the support of family or friends in your new university city.
The process of learning how to best support your health can feel overwhelming, and through all the health-related admin (the hours on hold, doctor’s waiting rooms, trial and error of treatment pathways etc…) it is easy to disregard how your mental health impacts chronic illness. The way that you speak to yourself about your health can stop you from accessing the help that you deserve, reaching out to friends for support and can very easily impact your self-confidence. If your health condition means you may not present as someone who is chronically ill or disabled to people you haven’t met before, it is difficult to communicate your needs to others who might falsely assume that because you look ‘well’ you can care for yourself in the same way as they do.
It’s hard to write an article about chronic illness without it feeling like I am placing false emphasis on the person who is chronically ill to support and heal themselves. This is not my intention. The more people I have spoken to about how to support me through my health condition, the more I’ve learned what does and doesn’t work for my body. This also means I have started to understand what I need. So, treat the below less like a self-help book, and more like a list of observations that may or may not help you:
- Learning how to say No: As much as it crushes my former-perfectionist heart, you cannot do everything. In my experience, letting go of the high standards many people with chronic illness hold themselves to is an act of immense self-compassion. One of the hardest mental hurdles to face with chronic illness is that how ‘well’ you feel, both physically and mentally, can fluctuate every day. Chronic illness blogger, Christine Miserandino, offers some fantastic advice on this. Her ‘Spoon Theory’ has connected a number of people suffering from chronic illness, with many referring to themselves as ‘spoonies’ (#spoonie has 2.8 million posts on Instagram and counting!).² Miserandino coined the term to help explain to a friend how being chronically ill often means you only have so much energy, or so many ‘spoons’, in a day to allocate to certain tasks, and that pacing yourself and prioritising your energy can help you protect your mental and physical health. When I was in a chronic illness flare and knew I had less ‘spoons’ to give, even making small choices, like swapping restaurant plans with friends for Netflix and takeaways instead, meant I could spend quality time with the people I care about and still get myself to the library the next morning. Advocating for your changing needs with how many ‘spoons’ you have each day is a surprisingly effective way to help those around you support you best.
- Real Self-Care doesn’t always look like it does on Instagram: Yes – despite the importance of prioritising activities that support your mental and physical health, it must be remembered that health looks different for everyone. While the idea of a bubble bath sounds relaxing, they can also be too fatiguing for a lot of people. Certain food that works best for your own body might look different from what’s reposted on other people’s Instagram stories. Like creating a toolkit of strategies that you can turn to in order to support your mental health, the same can be done for your physical health. Finding what works for you is expensive and boring but can make managing your health so much more bearable. Self-care is taking your medication, it’s accepting help from others, it’s also leaning the techniques that you have found personally help you manage your health and using them unashamedly. I now bring stick-on heat patches to the library just in case.
- Find your people: Having an online or in-person community of people who are also focusing on their mental and physical health can help to drastically shift how you view your own chronic illness. This starts when instead of telling friends you are ‘fine’ when they can tell you need support, you share how you really feel with them. Many universities have student led societies as well as university guided support groups that provide students a physical space to share with one another. New Instagram pages, blogs, and online communities are being formed all the time, sharing resources and testimonies as well as creating an inclusive space to talk about your mental and physical health. Sometimes it takes being reminded that you are not the only one experiencing your health condition to begin to shift the isolating effects of chronic illness.
In my own research into chronic pain (and too many hours scrolling on Instagram), I’ve found loads of blogs, YouTube accounts, magazines and artists that represent the experience of being chronically ill and disabled. Below is a sort of highlight reel. I hope they make you either inhale sharply through your nose or share with a friend who needs a digital pick-me-up:
- Jameisha Prescod’s online space for chronic illness, ‘You Look Okay to Me’, collates their published articles and podcast appearances into a truly powerful body of work.
- Lottie Drynan’s Instagram page and her community @youvegutthis is a joyful online community that is filled with great clothing hacks to help those with chronic gut conditions.
- Last week, my professor introduced me to the satirical zine ‘Dear GP’, and I read the first issue in one sitting. Who knew writing back to your health practitioners could be so cathartic?
- Youtuber and new mum (congrats!) Jessica Kellgren-Fozard has a brilliant YouTube channel that I’ve been watching for years, where she discusses managing her fluctuating health and career as a disabled woman.
- Sick magazine is an independent publication that collects art, poetry, essays and fiction created by and for those who are chronically ill and disabled. Check out the Reading List on their website for some other brilliant creative and non-fiction works about chronic illness.
Written by Grace Brimacombe-Rand