How I Survived University With A Chronic Illness

An essay/guide on how I made it through.

Image by Joanna Kosinska

I graduated in the summer of 2025 with a Master of Science degree in Biology with a Pathway in Intermediate Japanese from my university. I received my chronic fatigue diagnosis (the first one) somewhere in the middle of 2022. These days the beginnings of my actual medical acknowledgements escapes my memory. I tell you these things as a way to buttress the advice I’m about to give, to give you a reason as to why you should “listen to me” when I write this advice out.

When I started university, I was so bright-eyed and eager about the idea of being able to live my life the way people on TV do when they move onto a college campus, or how the people whose YouTube videos I’d watched in order to prepare had seemed to live their lives. I was sorely disappointed when my symptoms began to become something I couldn’t ignore anymore or rather, I was given the space where I was allowed to feel the full weight of them as they’d been piling upon me. I couldn’t leave the house, couldn’t attend my lectures, never mind spend time with my peers. It was rough.

I still did an integrated master’s degree to completion, managing to do two separate summer internships and an international laboratory placement alongside. I don’t say that to suggest that every spoonie should be able to do the things I did. I sacrificed a lot of things in other areas to be able to do those things and I, as I look back and write this essay, wonder how the fuck I managed to do all of that in the first place. I just want to show that I have some “credentials” to be giving advice with.

A loud and important disclaimer: do not read this hoping to hear that you will be able to do everything, that I’m going to show you the way to some sort of panacea that will make all your symptoms go away and let you achieve the things you think you should be able to. I didn’t get to do things the way I wanted to, the way I thought I should have, despite how it might sound, reading what I did manage to get done. I’m just going to give you some advice. And the first and foremost important thing I’m going to advise is:

1. Know that you are not able-bodied. Adjust your expectations accordingly.

It sucks. It is difficult to accept. Sometimes it is even difficult to remember. You get used to your own lowering baseline so much quicker than you’d like to think you would. I remember how I went from feeling like the world was my oyster for me to do anything with, that I was just like everyone else, to feeling so happy that I wasn’t asleep at 2pm despite having slept 8 hours the night before and awake again at 6pm, still tired. Even now, four years later, I am having to re-admit to myself that I am disabled. That I have a serious disability that without fail affects every single facet of my life and what I am able to do, what I am able to reasonably think that I can achieve. It sucks. It is difficult to accept. But it is important. You must check in with yourself and come to terms with what you can and cannot do, especially compared to what you think you should be able to do.

For me, I started having to make these calls when I had already enrolled. I had to sit with myself and my schedule and ask myself, seriously, what is something I can reasonably expect for myself?

My lectures were at all sorts of different times of day so one might assume, from the outside, that I would be able to attend the ones later in the day if I slept enough since I have “chronic sleepy disease”. Surely I must function better in the afternoon. But I knew that the time of day wasn’t the problem. It was leaving the house. It was the steps that came with leaving the house: packing my bag, making sure I’ve eaten, getting dressed and making myself presentable, making it down the three flights of stairs in my accommodation, actually walking to the lecture theatre, sitting in a seat, paying attention, writing notes, and then making it safely back home. That’s 10 steps, each with their own sub-steps. For an able-bodied person, leaving the house and going to class is probably two big steps with sub-steps.

It was not reasonable for me to believe that I could reasonably do these 10 steps several times in a week, sometimes multiple times in the same day, and expect myself to have the energy to go and do other things in my life. It was heartbreaking. I love to learn. I wanted to become a regular face in my lecture halls, get to know my professors, handwrite all my notes in the notebooks I’d specially purchased for starting school. But I couldn’t. And I knew it. When I tried to force myself to attend a lecture one day because of how upset I was at the idea I couldn’t be there, I forced myself out of the house and achieved six of my 10 step plan. I sat in my lecture theatre, next to my friend, logged my attendance, opened my notebook, and crashed out asleep in the one of the front rows, splayed out on my notes, half-drooling in front of the guest lecturer. The moment I woke up, he and I made direct eye contact. I then had a massive headache when I made it home in the end and was unable to even review the lecture slides to complete my class at home.

The solution I came to in the end was to attend my seminars and in-person language classes that were twice a week in the mornings and do the rest of my lectures as and when I had the energy to via the lecture recordings that they uploaded to Canvas, the academic platform where they hosted the class materials and assignments. That was much more sustainable for me. Think about what would be sustainable for you. That leads me to my next piece of advice:

2. Please be gentle with yourself as you figure out what works for you, and don’t expect each hurdle you set for yourself is something you’ll be able to clear.

This advice is especially for those who have variable conditions like mine. As I discovered what my limits were, how many spoons I had on a good or a bad day (if you don’t know what I mean by ‘spoons’, here’s a link to an explanation of the Spoon Theory), and learnt how much energy I needed to conserve to maintain a standard of living that didn’t make me even more depressed, I had to allow myself to be adaptable. And sometimes it was just straight up embarrassing, even when there was no one to hold me accountable to except myself.

In the beginning, I used to feel such deep shame at being unable to shower as much as I thought I should or do my laundry at a “reasonable” frequency because I wanted to focus my energy on learning. In reverse, I used to feel bad for how I prioritised “selfish things” like making my own meals from scratch and washing my hair instead of sitting at my desk and taking notes from a recorded lecture. I hope the sarcasm in the term “selfish things” came through as intended. Beating myself down didn’t suddenly give me more energy and less fatigue, less pain. Feeling shame about my hygiene and how I couldn’t take care of myself the way I wanted to didn’t magically make me able to. It only made me feel worse. It was when I started internalizing gentle self-talk that I realized how much I needed it. The whole world made me feel inadequate; I didn’t need to help it along.

As I managed to find my stride, I made plans to cook once or twice a week in big batches so I had leftovers to eat while I focused on my studies. I scheduled when I was going to shower and wash my hair so I could arrange my spoon/energy allocation accordingly. If I woke up feeling terrible on a seminar day, I didn’t beat myself up over it even though that took some practice. I took a deep breath, left space for the grief that comes from your body revolting against you and decided how I was going to take care of myself that day. This leads me into my third piece of advice:

3. Keep an open line of communication between yourself and your teachers, seminar tutors and any other members of staff that have direct involvement in your education.

For my Japanese language seminars, when I knew I wouldn’t be able to attend, when I knew I wouldn’t begin to be able to do the 7 steps necessary to get there and be present, let alone actually participate, and on the occasions where I knew I would be able to get there but wouldn’t be able to safely get home afterwards — every iteration of being unable to safely complete the class and live afterwards, all of them — I sent the seminar tutor an email telling her that I wouldn’t be there.

The first time I had to tell her that I wasn’t able to come because of my chronic illness I was so embarrassed. Feeling embarrassment and shame are running themes in this piece. But they aren’t rational feelings for me to have felt when taking steps to properly take care of myself. I am the only one who can fully advocate for myself. I am my own caretaker. My body, my person, was entrusted to me and left in my care. The way a parent goes to bat for their child even when it’s full of uncertainty, I must take up that role for myself. So I sent a lot of emails.

I don’t know how it will be for other academic institutions, but it was pretty easy to find the email addresses of the people I needed to contact. I usually sent emails to the convenors of the courses I couldn’t attend if it was a lecture (sometimes even I’d email the lecturer directly) and the seminar tutor if it was a seminar. I know that for me, the scariest and honestly biggest hurdle in this step was actually knowing what to say. I know in the age of AI assistants like the one that has forever besmirched my favourite chosen name (Claude) that you could just ask them to write them for you (it’s strange to consider that I didn’t have Claude when I was in uni, not that I would have used it) but I’ll save you some time and the planet some energy by giving you a template myself.

Subject: Absence in (name of the class; if you can manage, add the date)

Dear [name of the person you’re emailing],

I hope this email finds you well. My name is [full name here] and I’m a student taking the course [course name and number if applicable]. I am writing this email to let you know that I will not be attending this class/seminar/lecture because [symptom/reason; I often said because I was feeling unwell due to a flare of my chronic illness]. Thank you for your understanding.

Kind regards,

[full name]

I would also recommend CC’ing your school office so they have a copy of this correspondence as well. Developing this sort of relationship with your teachers where possible is valuable to you as a disabled student. By keeping this line of communication open, you make yourself visible in a way you otherwise wouldn’t be and give yourself the opportunity to ask for more help directly.

Once I had my template down, it was much easier letting people know that I wasn’t going to be in their classes and it took some weight off my mind. It also leaves a paper trail proving that you’re not a flighty student who doesn’t care about their classes but are instead someone who cares deeply, just cannot cope the way the system is set up for others.

Some of you might be wondering why that matters. I’ll tell you why: some schools mark attendance very strictly. I had a lot of encounters with my school office about my attendance. Why? Because my attendance was abysmal. I hardly ever showed up to anything simply because I couldn’t. There were penalties in place for low attendance including “guidance meetings” with the school office so they could discuss how to improve my attendance. Knowing that there was very little the school office could present to me as a method of increasing my attendance, those sorts of confrontations were the last things I wanted. Here, we segue into advice point number four:

4. Contact your academic institution and let them know you have a disability. If they’ve got one, make contact with their disability support bureau.

Please do it. I know it’s difficult. Please do it.

Personally, I’ve always had trouble seeking help from institutions with regard to my disability (demonstrated in the fact that it took me 4 years of living with ME/CFS before I agitated with my healthcare professionals to get prescription pain medication instead of just the over-the-counter stuff) but really, really I think you should.

I think I personally got the short stick of my university’s Disability Support Bureau, considering that I was never actually provided with a supervisor the way my other disabled peers seem to have been, but please don’t let that discourage you. What I did get from the disability bureau was pretty good: leverage when it came to telling the school office not contact me about my attendance since it was related to my illness, 7-day deadline extensions and extra time during my exams. All of my exams. That extra time gave me a buffer for when I experienced flares around deadline periods (which was often) and gave me the room I needed to get my thoughts together in exam situations as I maneuvered through fatigue and brain fog. If I hadn’t contacted Disability Support, I wouldn’t have had access to these things and it would have irreparably hindered my ability to make my way through higher education.

You’re likely to need proof to present them with in order to complete your application which can be a hurdle in and of itself but it’s worth the trouble in the long run. You’re likely also going to need to be able to tell them what support you think you’ll need. This is one of the many reasons you need to take that first piece of advice I gave: people are going to expect you to be the arbitrator and announcer of your own access needs. If you don’t know what you need, you’re much less likely to get guided to the places that will help you out. Once you get all of those things out of the way, you should be able to relax a bit. And if your Disability Support system is better run than mine was, you’ll probably be put under actual supervision where you can regularly meet up with someone whose job it is to listen to you and help make your university journey smooth and fit you the best they can.

It won’t be perfect. Disability support can feel desperately lacking when it comes to actual symptom management and helping you feel like you’re supported fully. But academia is hostile. It is hostile for the able-bodied, let alone for us. Which is why I bring up my last and, depending on your personal priorities, my most important piece of advice:

5. Make room outside of just studying and surviving to enjoy yourself.

While being one of the arguably more important points in this piece, it is also incredibly difficult to do. If you’re anything like me, the struggle to get things done for school makes it exponentially more difficult for me to put aside energy and intention for self-care, let alone for socializing. But it’s spending time with other people that makes university. I would have been so depressed and so alone if I didn’t find people to spend time with.

So how did I do that? I have a habit of making myself loud even when I don’t want to be. I don’t expect everyone to be able to do what I did, talking to people who I didn’t know in public and throwing love out into the world hoping some of it would germinate into long relationships. So what can you do?

Set time and spoons aside for your life. Not school, not coping with your symptoms. For having a life. Keep your eye out on your institution’s social events, trust me there are plenty going on. Just showing up is great. Even if you never see these people again, seeing them for a little while and interacting can keep you going for a while.

I used to try and maintain my relationships by replying to people’s stories on Instagram and it did work. For a while. Until I realized I was watching people live lives that noticeably didn’t have me in them because I was stuck inside my house. It was agonizing. So I don’t recommend that. I do recommend joining group-chats, Discord servers, that sort of thing. Communication you can do long distance.

Listen, don’t let your illness rob you of all your joy. I know it’s easier said than done. Sometimes you can’t stop it from hindering you. There are a lot of events I couldn’t go to because I wasn’t well enough, I was in too much pain or too tired. It was heartbreaking. But the moments when I was able to go outside, those moments I was able to actually spend time with others, the moments I was able to be a person in the presence of other people… those moments were incredible and I hold them and the relationships they nurtured in my heart to this day.

To recap. Here are my five tips to surviving university as a person with chronic illness.

1. Know that you are not able-bodied. Adjust your expectations accordingly

2. Please be gentle with yourself as you figure out what works for you, and don’t expect each hurdle you set for yourself is something you’ll be able to clear.

3. Keep an open line of communication between yourself and your teachers, seminar tutors and any other members of staff that have direct involvement in your education.

4. Contact your academic institution and let them know you have a disability. If they’ve got one, make contact with their disability support bureau.

5. Make room outside of just studying and surviving to enjoy yourself.

You’ll be alright. And if you’re not, that’s also fine. It was a coin toss between whether or not I finished university so often. Until you reach a point where you know that you cannot cope, keep going. I am not saying burn yourself out. It will not be worth it if you have a degree in hand but lose your ability to function, to cope, entirely in the process. Don’t feel ashamed if you don’t make it all the way through. Either way, you are a person deserving of love, support and respect. Always remember that.

Good luck and godspeed, fellow spoonie. I’m rooting for you.