Here are 5 tips and general advice from French_painstry_chef who is a cat-obsessed Frenchie living in London about studying with a chronic illness. She likes drawing on her tablet, and stalking squirrels. You can follow her adventures on Instragram (@french_painstry_chef).
You made it. No, you didn’t receive a Hogwarts kind of letter (and you’re not sure if you can bring your own owl?), but your name is on the list. The screen of your old PC wouldn’t lie, right? No. You’re in. That’s for real. You’re now on a five year journey in one of the top schools in your country. It was worth fighting for it. Studying hard. Day and night. Taking breaks in the middle of the night to watch Gilmore Girls, surviving on handfuls of Kinder Buenos.
I would have never imagined that 10 years after I sat on that train to move 1,000 kilometres away from home to learn, grow and become the person I wanted to be, I’d be sitting in a doctor’s office hearing that I have an incurable illness that will stick with me my whole life. Becoming ill when you’re away from home is terrifying. It’s even more scary when you’re in a foreign country. My first symptoms started when I was doing my Erasmus year in Sweden. But it all got worse during my fourth year: the busiest and most challenging year of all. How will I get through this? I thought. How will I ever have a career?
I didn’t have a crystal ball to answer those questions back then, but I managed to finish my Master’s degree and have worked full-time since then in three different countries. How did I survive becoming ill while studying? There is no simple answer to that, but the things I learned are as follows:
1 Become a planning master and anticipate potential low-energy moments
Studying is not easy. For anyone. But especially not for us spoonies. Many students give up on planning because it is too time-consuming. But for me it was a life saver.
Bottomline: plan everything you can. You might be too ill to go to a class, but you can read a few pages of the book you need to read for your exams. You might not be able to go through your notes, but you can listen to a podcast about WW2, or the body anatomy and feminism in Buffy (yes please!).
Audiobooks, podcasts and Netflix weren’t around much when I was studying, but they can become your best companion. Even if you don’t stick to your schedule religiously, allowing time to recover (or to allow for any flares) will help you keep your head above water.
2 Write down, highlight with bright colors, and prepare briefings
I’ve always been a very visual person, but becoming ill has forced me to focus on my assets. Bodies can be unreliable, but whatever happens, your notes won’t get ill – i.e. they won’t need to go to A&E or take a sick day. Everything you write can be reread, highlighted and impregnated in your brain. And if you need notes from someone else because you couldn’t go to a class, having notes to share can come in handy.
3 Limit your triggers before you have an exam
I didn’t know what was happening at the time, but a lot of my symptoms seemed to get worse after eating. After a few trials and errors, it felt like a very simple diet was helping me keep my symptoms at bay. Years after that we found out that I have delayed gastric emptying and mast cell issues. Playing it extra safe with the things you know might trigger a flare – too much activity, certain foods, etc.- can help you go through exams. It’s never a 100% sure thing, but it can make a big difference.
4 Find people you can trust who can share notes with you if you have to miss a class
I remember one particular Friday quite vividly. I had such a bad flare of symptoms that I had t
(unwillingly) leave the lecture theater. The guilt was strangling me, and a wave of anxiety about missing a class hit me hard in the face. There was a girl and a boy in my class that I got along with. They didn’t know me that well to be honest. Yet they quickly offered to share their notes with me. I was lucky enough to attend most of my classes, but I knew that whenever I was too ill, I could count on them. These two people are now two of my closest friends. There are other people like them out there who will lend a hand even if they don’t know you. It can be scary to open up to strangers, but if it means getting your degree then you should not hesitate to ask.
5 Discuss deadlines/exams with your administration
Some universities and schools are flexible and take into account the fact that some students have a disability and need some extra time to finish their thesis or will have to retake an exam. My advice is, don’t be afraid to ask. You have rights and they need to hear you out. I was lucky that I was granted an extension when I was writing my thesis without having to fight for it.
But if you need to fight, get all the advice you can get from disability charities and human rights organisations Scope and Disability Rights UK (firstname.lastname@example.org) are two good ones if you’re in the UK.
But beyond advice, there are two realities that I had to come to terms with:
1) It is going to be hard: just breathing and putting your socks on can be hard when you have a chronic illness. So studying, which always comes with a nicely wrapped package of stress, can be exhausting.
2) There will be moments when you’ll want to give up. Moments of doubt, panic and despair. Don’t let these moments destroy your ambition and dreams. You might have to take a break/drop out: it’s a hard one to hear, but you might end up being too ill to study. And that’s ok. You haven’t failed anyone. You might be able to finish your degree later, or decide to do something else instead. There’s never only one job you can do in life, despite what we’re taught to believe! While this can sound scary at first, acknowledging those realities instead of keeping them bottled up inside provided some much-needed relief for me.
A final word from The French Painstry Chef:
“Looking back, there’s one thing I didn’t do that I’d recommend to everyone: reach out to other people going through the same experience. Because thousands of people are going through the same thing, asking themselves the same questions. You’re not alone in this.
Whatever happens, whether you have to drop out or slow down, you should be bursting with pride! The right to education is a fundamental right – Article 28 of the UN Convention on the Rights of the Child says that children and young people have the right to education no matter who they are, regardless of race, gender or disability; if they’re in detention, or if they’re a refugee! No one should be denied an education of their choice! Never forget that!“
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