U of O students point to gaps in university’s accommodations for those with chronic illness
When Kimberley Charland started her education at the University of Ottawa, it didn’t take long for her to start feeling like something was wrong. In her second semester, she went to see a psychiatrist, and it was then that she was diagnosed with bipolar disorder.
Suddenly, she wasn’t only grappling with the demands of her education — which, majoring in computer engineering and minoring in business, are significant — she was facing the challenges of chronic illness as well.
This is a balancing act performed by a considerable population of university students, and a population that, according to an American study, is growing.
Bipolar disorder affects about one per cent of Canadians, according to the Canadian Mental Health Association.
Charland is diagnosed with Bipolar II, characterized by periods of high energy and mood contrasted with periods of depression, and an associated anxiety disorder. In her first year, she spent weeks in bed.
“For weeks at a time, you feel really great about yourself, you feel amazing,” said Charland. “It’s different for everyone, but it’s for either a couple of days or a couple of weeks, and after that, you just crash. That’s when the depression hits, and it’s not just a crash like you’re tired, it’s a crash like you’re burnt out.”
The treatment options for bipolar disorder vary by case but often involve both medication and psychotherapy. For Charland, a strict routine is at the centre of her management strategy. She also takes medication to help with sleeping patterns and mood regulation.
“If your sleep goes off for some reason, that can be almost an immediate trigger,” she says. “If (I) have two nights where (I) don’t properly go to bed at the same hour, then (I’m) done for a couple of weeks.”
Now in her fourth year at the U of O, Charland has figured out which strategies help her manage her bipolar disorder, but it was a long process. She says that it took her two years of consistent use of one medication before the condition stabilized.
Even then, careful treatment continues to be integral to avoiding depressive episodes for Charland. The expectation is that medication should “kind of help, but you still have to do a lot of other things to mitigate the effects of it.”
As a student, this kind of stability is difficult to achieve.
“I can’t pull an all-nighter, or even go to bed three hours later than I usually do,” she says. “And for me, the impacts of that are like — well I can either cram and get a good grade and go to bed at one instead of 10, but then I’m also running the risk of the next two months of my life being awful. So which one do I want to take?”
As a result, Charland has to treat her studies with a different attitude than most of her peers. She says the impact is primarily in terms of prioritization: while other students put their academic careers before everything else, she is forced to put her health before her schoolwork, whether that means being late on assignments, studying less, or skipping class for doctor’s appointments.
“You know, our bodies are kind of like elastic — you can stretch them out a little bit and they’ll come back,” she says. “So you can not sleep as much for a couple of days and it’ll slowly come back and you’ll be okay. But for me, I don’t have as much of that. I don’t have that ability to be more flexible.”
This presented her with a difficult reality: Like many students, putting school first was drilled into Charland’s head throughout her childhood, but when her health was at risk, that could no longer be the priority.
“It’s terrible because we all grow up hearing ‘School is your number one priority! Do your labs!’ We can’t do that. For my situation, it can’t be my priority.”
Gabriel.le Crovasce sees a lot of doctors. Endocrinologists, gastroenterologists, rheumatologists, orthopedists, psychiatrists and psychologists are all par for the course.
They were diagnosed with borderline personality disorder, depression, and generalized anxiety disorder at age 12, but it wasn’t until much more recently that they were diagnosed with their other chronic illnesses. Gastroparesis, fibromyalgia, chronic fatigue syndrome, and patellofemoral pain syndrome (PFPS) all came in the last two years.
“A lot of them were misdiagnosed because I also have mental illnesses,” they say. “Doctors were not believing me, which happens a lot in the chronic illness community.”
A typical day in their life may see a number of symptoms ranging in severity.
From anxiety to insomnia, fatigue to joint pain, and abdominal pain to vomiting, Crovasce’s combination of illnesses present themselves in a variety of ways. All of which makes being a second-year student in feminism and gender studies and criminology incredibly difficult.
“Since I have a lot of illnesses, it’s a lot of different treatments,” they say. “I see a lot of doctors. All of the appointments are during the week, so I need to skip a lot of my classes because of my appointments. So it’s challenging. It’s a lot of appointments, which can be three hours long. It’s a lot of surgery. It demands a lot.”
Outside of appointments, Crovasce also has to balance medication, therapy, and even sometimes being fed by tube as a result of their gastroparesis. Hospitalization forced them to take a semester off from school. And they’re no stranger to prejudice and ableism.
“I’ve heard a lot,” they say. “Sometimes people say we’re faking it, they say that it’s not that bad, sometimes they say that it’s all in our heads. Especially when you have a mental illness as well, people don’t take it seriously.”
Discrimination and misunderstanding like this can have hugely detrimental effects on a person’s ability to cope with their own chronic illnesses. For Crovasce, part of their treatment consists of allowing themselves a kind of personal, internal acceptance that is not always given to them by others.
“One of the things that helps me is accepting that I need mobility aids,” they say. “Putting aside internalized ableism and really accepting that I need my cane.”
Accepting their own needs has helped them come a long way in addressing them, but it continues to be a learning process.
Sarah Gebert has dealt with asthma for her whole life, but the challenges of chronic illness were multiplied when she also got streptococcal pharyngitis — commonly known as strep throat — in 2016. Since then, she has had the infection intermittently every few weeks. She describes it as a consequence of her “immune system attacking itself.”
Symptoms include fatigue, shortness of breath, and frequent illness. Even after having her tonsils removed, she continues to suffer from “about half” of the symptoms of strep during her frequent bouts of the illness.
Now in her second-year in geography and political science at the U of O, she too has to treat her studies with a little more consideration than most.
“Honestly, when people are like ‘I can push this off for a day, I don’t have to work on it now,’ for me it’s like, I kind of have to,” she says. “As soon as I’m better, that’s my period to start working. So while other people get to take a whole bunch of breaks, I know I’m probably going to get sick in the next week, so I need to make sure all my projects are done before that.”
Like Charland, being chronically ill forces Gebert to rearrange her priorities. For Gebert, this means putting school first on her good days in preparation for her bad days, and that has repercussions in the social sphere as well.
“My friends will be like ‘let’s go do something!’ And I have to say ‘I’m sorry, I’ve got to do my schoolwork,’ ” she says. “Or I’ll just feel super sick and they’ll be like ‘we don’t see you anymore,’ and I’ll be like yes, that’s because I’m ill.”
Charland agrees that balancing academics and a social life is made more challenging by chronic illness.
“It definitely does make it a little more difficult because there are aspects like, I don’t really drink because it’s really not suggested for me,” she says. “I can take my pill at the hour I need to, but then if I’m still out at the club at 11:30 I’m going to be like, ‘I need to take a nap in the bathroom or something.’ ”
As usual, everything becomes a matter of priority. Once heavily involved in student life, Charland said that the “balancing act” of splitting her efforts between academic and extracurricular activities became very challenging since both had to take a back seat to her health.
Crovasce has had to make similarly difficult decisions about prioritization. For them, it’s a matter of directing their limited energy in the most important direction, even if that means distancing themselves from their friends.
“I see this a lot with my chronically ill friends, when we’re in school, we usually don’t hang out,” they say. “Because all of us are putting all of our energy into going to classes, doing our exams, doing our papers. We just don’t have energy for having a social life.”
“I wish people would understand that,” they say. “It’s not that we don’t want to go with them, it’s not that we don’t want to have friends, it’s just that its too difficult to maintain a social life while being in school.”
Charland says that chronic illness forces you to open up to your friends in order to maintain a healthy social circle. For her, that means telling new friends that she’ll go out with them but won’t drink.
Gebert agrees that having friends understand the challenges of life with a chronic illness is critical to reducing stigma and conflict.
“It’s just kind of become a daily part of my life,” says Gebert. “So I don’t find that my friends are judgmental, I just find that they’ll laugh and go ‘Oh, classic Sarah. Always sick.’ ”
Identifying as non-binary and lesbian, Crovasce started using their social media to talk about LGBTQ+ issues. Soon after, they discovered that social media gave them a unique opportunity to connect with communities of people who are disabled or chronically ill.
“A lot of people in the chronically ill community and the disability community talk about social media as a form of social life,” they say. “Without social media, we wouldn’t have any social life because it’s the only way we can manage talking to people, because going out is too much. Without that, I was really isolated.”
It also gives them an outlet to actively try to break down the barriers that they face in school and beyond. They call it “a really good way to destigmatize people around disability and chronic illness, and also to inform people.”
The U of O’s Student Academic Success Service (SASS) has an academic accommodations office that’s built to help relieve some of the stresses of chronically ill students.
“Academic Accommodations are put in place in order to ensure an equal playing field for all students,” wrote Vincent Beaulieu, acting manager of academic accommodations, in a statement to the Fulcrum.
Beaulieu wrote that the role of the academic accommodation process is to “assess, establish, and implement appropriate academic accommodations for students who have a temporary or permanent disability.”
He elaborates that the services are made with the intention of facilitating equal access and participation at the fullest academic standard for students with disabilities.
Standard accommodations include note-taking support, sign-language interpretation, adapted furniture, extra time for exams, or specialized software.
While the mission statement reads well, students say there are gaps in the way the university handles the needs of chronically ill students.
Charland has used the services before, and she thought that there were few resources targeted towards the specific needs presented by her illness.
“A lot of people associate ‘mental health’ with like wellness and care, and being anxious or being depressed because of certain things that are going on in your life, and they associate mental health less with things that are permanent,” she says. “If you’re bipolar, if you have schizophrenia or borderline personality disorder, that’s not going away. It’s not caused by one thing in your life, it’s just there. It’s going to stay with you forever. And I feel like the university doesn’t care as much about us in that sense.”
She said that her attempts to have her need for later exams — a consequence of the side effects of her medication — accommodated with SASS failed, requiring her instead to apply for individual deferments.
Beaulieu admitted that while SASS tries to work individually with students to develop tailored solutions for their needs, their office “does not have the authority to change the timing of an exam, since academic regulations require all students in a course to write their exam at the same time (in order to preserve academic integrity).”
Another problem with the university resources is that many students with chronic illnesses simply don’t access them. Gebert, for example, just doesn’t know where to start.
“There are definitely resources, I just don’t know where they are,” she says. “I know there are other people out there with the same issues, like being sick all the time, but I honestly feel sometimes like I’m just isolated in that aspect. I don’t really want to go to the doctor and be like ‘hey, what’s wrong?’ because I know they’re not going to be able to help me. So I just go by myself or just take a day off alone.”
For Crovasce, the process of academic accommodations — which, according to Beaulieu, takes about two weeks — just isn’t worth it. Particularly coming from out of province, producing the required medical documents is complicated.
“With the documentation and everything, it was more difficult to ask then just to literally do it myself,” they say. “A lot of time with chronically ill people, we just do it and don’t bother with the accommodation because it’s more demanding. To do the papers, and the documentation, which demands a lot of time and energy, a lot of confronting people. Justifying our disabilities or our chronic illnesses, justifying our needs. It’s more difficult than just doing it.”
Disclosing disabilities and chronic illnesses can also subject students to discrimination. Charland says it’s not unusual for professors to question her deferrals, pegging her as just another “moody teen,” or calling her “lazy.”
“It’s definitely more common on the professor level, where they’re not that educated and they’re not taught if they’re not educated about a certain illness that they should research it before bringing up certain things,” she says. “Sometimes I’m like, OK, well now I don’t even want to come to your class anymore because I feel like you don’t understand.”
Beaulieu is troubled by this lingering stigma, writing that “academic accommodations do not provide students with disabilities with an unfair advantage. Students who have approved academic accommodations would be at an unfair disadvantage if they did not use the accommodations our office approved.”
He says that training sessions are in place to work on educating professors and other staff about “their roles and responsibilities related to supporting students with disabilities,” and “the importance of not singling out students because of their approved accommodations.”
Although Beaulieu says that the recommendations of medical professionals are taken into account when establishing accommodations, Charland thinks this is something the university can improve on.
“I just feel like there should be more openness to what doctors are saying to them,” she says. “To them, it’s like there’s this structure of accommodations that you can get, and if it’s outside there they probably won’t do anything, because it’s very structured.”
She says that if doctors recommend specific fixes that lay outside the realm of what is usually offered, she’d like to see a little more negotiation between students and staff about what can be done. She also specifies that in particular, she’d like to see more of this relationship with the faculty, not just the university at large.
As time goes on and demand grows, Beaulieu says changes like these are always possible.
“These services are offered based on the needs of the students registered with our office,” adds Beaulieu. “We are constantly adapting our service offering to meet new and emerging needs, and our services also evolve as technology and tools improve and evolve as well.”