Always tired and always in pain
Hiding it with a smile
It’s Friday, 11 am, and European languages and cultures student Alexandra Has (28) has just finished up her first week of classes in eighteen months. ‘Once I get home I’ll go back to bed’, she says.
One class a day is so taxing she needs the rest of the day to recover. But she also needs to study. ‘I plan my days very carefully because otherwise I can’t make it work.’
You would never know anything was wrong with Alexandra by looking at her. She studies, talks, laughs, is interested in other people, and comes across as generally cheerful. But her smile hides her daily struggle: Alexandra has fibromyalgia, a chronic pain syndrome. She has been in pain all day, every day, since she was twelve.
‘I am currently in pain, but I’m not having the feeling of panic I often have. I cry myself to sleep at least twice a week because it’s just too much’, she says. Fibromyalgia also makes it difficult to judge when to take how she feels seriously.
‘Sometimes I’m convinced I have a tumour, because I genuinely feel pain in my head. It’s difficult to try and make the distinction between the fibromyalgia and a provable physical ailment.’
I don’t show how I feel in class. Other students have no idea there’s anything wrong with me
Small things that are easy for other students, such as looking at a screen for a long period of time or sitting in a lecture hall for two straight hours, are practically unbearable for Alexandra. She prints every text she has to read and takes a walk around the block during breaks.
‘I don’t show how I feel in class. Other students have no idea there’s anything wrong with me. I’m not here at university to make friends, necessarily. And because I take fewer classes than other people I don’t really get close to them. Lecturers don’t always know what’s going on either. I just want to be seen as a normal student, without a special label.’
But appearing normal is a lot of work, and she reaches her limits quickly. When she pushes too hard, she breaks down. ‘I try to prevent that by studying at my own pace; I take fewer classes as well.’
Johanna (27) doesn’t tell just anyone about her disability, but she does let her lecturers know. She usually asks her study adviser to inform them. ‘It doesn’t usually do much though. Not all lecturers are accepting of my disability.’ If she wants to postpone a deadline, she often has to go back to her study adviser.
She has irritable bowel syndrome (IBS) and dysthymia. The IBS means she’s very sensitive to many food products, such as lactose. The dysthymia causes fatigue, problems with concentration, and mood swings. ‘I’m basically tired twenty-four hours a day’, says Johanna.
I’m basically tired 24 hours a day
But her disabilities didn’t stop her from pursuing a research master – in spite of study advisers who have tried to dissuade her. ‘They didn’t stop me, but other people with disabilities might be discouraged and settle for a path that doesn’t work for them instead of pursuing their dreams.’
She insists that disabilities don’t necessarily prevent people from doing well academically: ‘It’s not that I can’t hack it: my body just doesn’t always cooperate. But if people take that into account, I’m usually fine. In fact it can be good to have that extra bit of motivation.’
Because of her disabilities, Johanna will take longer to finish her studies. ‘I’ve been working on my master for four years, when the programme should last only two. I’m okay with that, but I am running out of financing.’
Students who run out of financing due to disability can ask the RUG for compensation through the graduation fund. To receive it, they must meet several conditions. First, they have to inform the RUG of their special circumstances in a ‘timely’ manner. The website doesn’t specify what constitutes ‘timely’. Second, they have to provide evidence of their disability, including a doctor’s or psychologist’s statement.
Johanna says you can’t notify the RUG of any delays you have suffered after the fact. ‘That’s tricky, because sometimes you’re delayed by unforeseen circumstances, and then you don’t get any compensation’, she says.
Student deans are often busy, so it can take at least a month
On top of that, it can take a while before you get in to see a student dean. ‘It can take at least a month, that’s how backed up they are.’ Another obstacle is the fact that you can only apply to the graduation fund while you’re still receiving government financing. ‘I entered the loan-only phase two years ago. So I can’t apply for the graduation fund either, even though I’ve suffered a delay.’
Alexandra also has trouble making ends meet while she studies, even though she receives government benefits under the Wajong scheme. ‘I’m kind of stuck in between a rock and a hard place: part-time students get to keep their benefits, but the benefits of full-time students are docked and reduced to 25 percent, because they can get government financing for their studies. European languages and cultures is full-time only. And because I’m taking much longer to finish, I have to borrow a lot more money.’
Her financial difficulties aside, Alexandra sometimes wonders why she studies at all. Other students on focused on padding their résumés with committees, internships, and volunteer work that will make them attractive job candidates. But Alexandra will never have a ‘normal’ job. ‘I do hope to be able to teach Spanish after I graduate. Maybe three or four classes week.’