Navigating University (Uni) With Long Covid | At Our Pace

"There was a time when any hope of university felt out of reach. I’ve had to reimagine my future and take a different route forward. I missed most of secondary school years 9/10/11 thanks to Long Covid, PoTS and repeated COVID infections. On my worst days even getting out of bed was impossible and I didn't get any help from the local authority. It all felt impossible."  I, Age 20, Youth Advocate

Long Covid and University (Uni)

Starting university can be nerve racking for any student ,even without the added complications of a long term health condition. This blog is an introduction to help freshers find an inclusive guide to make a more manageable uni experience. Making little daily swaps and adding breaks can make everything more enjoyable while accommodating your condition

Uni Life

I’ll be sharing three big parts of student life from my own experience of managing Long Covid: socialising, cooking and education.

Before picking your uni there are a couple things you should consider. One of the reasons I chose my uni was because it has a small campus with accommodation on site. I am an ambulatory wheelchair user (which means I use a wheelchair to support my mobility and can also walk). Advocating for yourself can feel like a full time job on top of uni life, don’t be afraid of asking for the help you need, having a health advocate that supports you can make a big difference.

Things to think about when choosing a uni:

• Campus size and how easy it is to get around

• Availability of accessible rooms or on site accommodation 

• Support services and disability advisors 

• Distance between accommodation, teaching spaces and student facilities 

• How responsive and knowledgeable staff are to your questions before you apply

Socialising 

Personally, socialising was the hardest part of uni to navigate as a fresher with the extreme fatigue that comes with Long Covid. Now that I’m going into second year I have definitely found ways to still have fun without burning out.

As annoying as it is for a night owl to be told to go to bed early, having a routine for most of the week really helps. Most uni’s have student socials on Wednesday evenings (the most fun night), so apart from then and at the weekend, figuring out a bed time routine can help you wind down after a long day and recharge.

For me that means taking magnesium and melatonin early (talk to your Dr about what is right for you), making a sleep tea and doing some gentle Yin yoga or meditation. At first it can feel pointless and you might not be able to relax, especially if you can hear others around you having fun, but it is worth it. On the couple of nights you do go out, you’ll have more energy to enjoy it. If I have free periods on the same day as a night out, I'll always make sure to have a nap beforehand, no more than 45 minutes as that is the optimum nap length to avoid the grogginess.

Cooking 

Cooking can feel exhausting, especially after a long day of classes. Each food shop, I grab one or two super easy, no effort meals (like a ramen) to save energy, limiting time needed for standing up while cooking. Fortunately I got an accessible room at my accommodation with a kitchenette, which means I don’t need to use the communal kitchen for cooking. That has been a game changer for preserving energy by avoiding small talk and the business of everyone cooking at the same time. This can be exhausting and throw off plans of any plans of pacing. If you don’t have this set up, I suggest using headphones with peaceful music on and most of your flatmates will leave you to it. 

Everyone at uni finds their own schedule and way of preparing meals. Batch cooking at the weekend is often the easiest and cheapest way to prepare daily meals for the week ahead. That is something I'm still learning to manage with Long Covid (and as someone with a bit of fear of reheating food!).

I tend to buy one portion of fresh meat a week and then make mostly vegetarian meals as meat is so expensive. Trying to meet protein goals with veggie meals and other dietary complications like being a Celiac and dairy intolerant can be tricky. If you’re going to uni soon, start experimenting with recipes at home. That way if it does go wrong you don’t need to rely on it to feed you all week when you might not have any other options.

Studying & Classes

Trying to focus with brain fog, fatigue and other medical complications is hard work. Finding the right accommodations is essential to survive your first year. 

Things that have helped me are:

•  Printed PowerPoints (to limited screen time)

•  Extra time for coursework and exams

•  A scribe or reader for exams

• Sitting exams in a small low sensory room

• Recording lectures to listen back to later

• Taking handwritten notes (as the brain remembers it better than typing)

• Regular check ins with one key member of staff

At my uni, I get ten minutes between two hour lectures. When I had longer breaks between classes in first year I would go back to my room and have a nap during those times. Since I use a wheelchair, and  my campus is small this makes resting between classes possible. Due to my campus being smaller it means I can get more personalised care, and although it’s a constant negotiation I do feel like that my uni wants to learn about how to support students with energy limiting conditions. However not every uni is like this though. It is important to thoroughly research accessibility before making a final decision. 

Be sure to ask all the questions you want before you pick your uni and get those answers in writing to avoid any mix ups. Before I started uni I spent a lot of time worrying about things I had forgotten to ask. 

 Here are a few I wish I had thought of asking early on:

• On days where I have longer classes and I’m in a flare up, what is the catch up possibilities 

• During a flare up would it be more helpful to attend subjects I struggle with, how will this affect my attendance?

• As long as uni are aware of my medical condition will they be lenient if I turn up to some lectures late ?

Final Thoughts

Going to uni with a long term health condition is possible with the right accommodations,  but it’s still hard work. Even with extra help, you have to work ten times harder than a ‘healthy’ student to study and socialise which are both important parts of uni life.

On days that are particularly hard, and symptoms get in the way, remind yourself: becoming independent whilst being ill is incredibly difficult, and you should be proud of yourself for even being there. Even scraping passes is an achievement, so go easy on yourself whatever your grades are.

It’s tough not to compare yourself to others, but remember:  just living independently already uses up so many spoons. Passing classes and keeping up socially are sometimes luxuries that might feel out of reach, but if I can do it, I hope you can too.

Top Tips

• Apply early for an accessible room

• Ask the university for a named person as your key point of contact who will help with your needs

• Don’t be shy, if going to university is your dream you are going to have to get good at advocating for yourself

• Don’t be surprised if you get flare up ( more than usual) - everything is new and requires more energy.

• Trust your instincts, you know your body best.

Blog Written by I, Age 20, Youth Advocate

About This Blog

This blog is part of a youth-led series called At Our Pace, written by young people living with Long Covid and overlapping illnesses.

The project creates safe, flexible, and supportive opportunities for young people to share their lived experiences, build confidence, and take part in meaningful creative work, at a pace that respects fluctuating health.

Contributors whose work is published receive voucher incentives in recognition of their time and energy, made possible through funding from the Big Give Christmas Challenge.

The series exists to amplify underrepresented voices, reduce isolation, and support young people whose education, employment, and independence have been disrupted by Long Covid. While we may not be able to publish every submission, all blog ideas and expressions of interest are thoughtfully considered. If you’re a young person thinking about getting involved, your blog suggestions are warmly welcomed.

Please email info@longcovidkids.org to start the conversation and learn more about this opportunity.

Learn More About the Project

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