'Tightening of constraints': How immunocompromised students navigate the return to 'normal'

Terri Anderson planned to become a social butterfly in 2020.  

She was going to meet up with friends at coffee shops, go to writing events and break out of her shell. Due to her social anxiety, the fifth-year creative writing major hadn’t been spending time with a lot of people.  

“I was like, ‘This is it, things are only going up from here .... I’m going to be hanging out all the time in the lounge. I’m going to be going to all the events. I’m going to be spending so much time with people,’” Anderson said.

But when COVID-19 hit, everything changed.

At first she was worried about her father’s health because of his age. But once she started taking immunosuppressants herself, her comfort level dropped even lower.

Being immunocompromised means an individual’s immune system isn’t able to work properly to protect them from infections, making them more vulnerable to serious illnesses.

COVID-19 has been particularly difficult for immunocompromised students. According to a study published by The Public Library of Science One, immunocompromised patients are over three times more likely to die if hospitalized due to COVID-19 compared to individuals with healthy immune systems.

On top of the health risks amplified by the pandemic, Anderson struggled to maintain a sense of community because of the social isolation that COVID-19 safety requires.

“[Now] I meet up with people for Zoom writing sessions and stuff, but it’s lonely,” Anderson said. “I feel pretty isolated.”

For students like Anderson, coming back to campus means bearing the risk of getting COVID-19 in exchange for a degree. It also means navigating a community that seems to be moving on from the pandemic without them.

Decisions loading

In the 2020/21 school year, UBC made the decision to hold classes primarily online for the entire year. But the 2021/22 year has been a mix of in-person and online, depending on the professor and the COVID-19 situation at the time.

The timing of UBC’s decisions around in-person and online schooling, specifically this academic year, has been particularly tricky for immunocompromised students to navigate.

President Santa Ono announced the new vaccine declaration and rapid testing policies on August 26, 2021. The university launched the program on September 7, the first day of classes for the winter term, though the enforcement of the policy deregistration for students refusing to comply only came into effect in January 2022.

On December 22, 2021, UBC announced that term two classes would be online until January 24, 2022, following student outcry around in-person exams. The return to in-person classes was delayed to February 7, on January 12, 2022.

The more time that UBC takes to announce its decisions regarding instruction during the pandemic, the less time students have to prepare.

“If you are someone who is more at risk from [COVID-19], you’re probably taking extra steps and more complicated steps in terms of getting prepared and getting to campus in a certain way,” said Anderson.  

Dr. Sylvia Fuller, a professor in the department of sociology, said that she feels similar to Anderson regarding UBC’s communication strategy during the pandemic. Although not immunocompromised herself, Fuller’s partner is a highly immunocompromised transplant recipient.

“It’s a lot to try and keep track of what’s going on and it was certainly very stressful waiting to find out what UBC’s plans were at various stages in the pandemic,” said Fuller.

AMS VP Academic and University Affairs Eshana Bhangu also criticized UBC’s communication throughout the pandemic. “We keep saying that [UBC needs] to communicate timely, timely, timely and then they do it at the last minute,” she said.

Matthew Ramsey, director of university affairs at UBC Media Relations said “UBC has made every effort to communicate as quickly as possible throughout this pandemic.”

“The [COVID-19] situation has changed quickly, and often with little or no warning. We would ask for students’ patience, as this organization, which is the size of a small city, adapts and evolves to changing health guidelines and health imperatives,” he added.

Ramsey said that UBC is going “above and beyond the health guidelines” by distributing masks and implementing the rapid testing program for students.

“We appreciate the concerns, and we know that comfort levels vary from person to person with returning to campus. We have tried to put into place a framework for addressing those concerns as best as we can,” said Ramsey.

UBC’s COVID-19 policies and procedures have followed BC’s Provincial Health guidelines — something Charlie, an immunocompromised graduate student whose name has been changed to protect her health information, said she thinks doesn’t make sense.

Charlie said UBC needs to consider that the Vancouver campus is a relatively small, isolated area populated by a mix of both commuters and residents who engage with BC COVID-19 policies in varying levels of compliance.

“I feel like it’s too much of a risk for me to participate in this in-person learning,” she said.

Similarly, Anderson feels that UBC only listens to some students’ concerns, such as those bemoaning ‘Zoom University’ and social isolation, and not to the concerns of others.

“It often feels as though they’re going to say the more popular answer for as long as possible,” she said. “It doesn’t feel like [UBC is] actively trying to protect people who could be more vulnerable. It feels like that’s kind of an afterthought.”

According to Ramsey, the university made the decision to return to mostly in-person instruction on February 7 following “extensive consultation with its internal communities” and in accordance with health guidelines.

“This isn’t a question of popularity, it’s a question of trying to get people back in class after close to two years of predominantly online learning,” said Ramsey.

Losing compassion and accessibility

Coming back to campus also sparked concerns from Anderson and Charlie that accommodations that had become the norm during the pandemic would once again only be accessible through formal procedures.

For Charlie, one benefit of the pandemic was that people around her gained an understanding of accessibility and became more compassionate. It became “acceptable” for her to not attend in-person events.

“There were no questions,” said Charlie. “The lack of justification that I have to provide really made me feel like it was a much more supportive community than it maybe would have felt in the past.”  

At the university, many instructors became more flexible with absences. UBC even allowed students to defer some exams in mid-December if they were concerned about COVID-19.

But those compassionate practices aren’t written in policy. Policy LR7, a joint Board of Governors and Senate policy for accommodation for students with disabilities, explicitly states that it does not apply to students who are experiencing temporary health issues. In those cases, students are instructed to file for academic concessions as outlined in the UBC Calendar.

According to the policy, if there is uncertainty whether a student is experiencing a “temporary health issue” or a disability, their instructors and UBC staff should consult with the Centre for Accessibility (CFA).

The two policies leave immunocompromised students with few options — enrol in classes and risk being denied accommodations or take a leave of absence. However, taking a leave carries significant consequences.

“When you take a whole term off, you have no access to any of the university resources, you have no access to funding, [you] have nothing,” explained Charlie.

Both Anderson and Charlie want more flexible support systems to remain in place during fully in-person learning. According to Bhangu, the AMS is still advocating for “accommodations and options,” like multi-access instruction and recorded lectures for immunocompromised students.

“When you hear stuff like, ‘It’s time to live with the virus, stop living in fear, let’s just go back in person.’ I totally understand and respect that. But it is important to remember that these groups cannot just live with the virus,” said Bhangu.

Janet Mee, director of the CFA, said the academic concessions policy, while not specific to supporting immunocompromised students,  is “very relevant” to providing immunocompromised students with accommodations to meet their program requirements.

“That policy particularly has been interpreted in a very broad and flexible way during the pandemic in order to address some of the unexpected consequences of the pandemic itself,” said Mee.

Mental health consequences ongoing

Outside of logistical challenges, this pandemic has been hard emotionally on immunocompromised people.

“A lack of control [and] a lack of certainty about the future is a primary concern [for adults with disabilities] that’s contributing to decreased mental health,” said Dr. Kathleen Martin Ginis, director of the Centre for Chronic Disease Prevention and Management.

Martin Ginis worked on the COVID-19 Disability Survey. While the survey focused on adults with disabilities in general, it did not investigate the experiences of students as their own distinct population.

Noorjean Hassam, UBC’s chief student health officer, encouraged students to access any kind of mental health support they find most appropriate for themselves. She explained that meditation, mindfulness exercises, school clubs, online counselling and UBC’s Wellness Services could all be helpful for students.

“There’s so much evidence to show that most people’s negative mental health impacts of this isolation loneliness can be addressed in those ways and those ways are really effective if people put that honest effort into trying them out,” she said. 

But UBC’s mental health services do not target immunocompromised students. Bhangu thinks that’s an issue.

“In terms of mental health support, I think always more can be done,” said Bhangu. “When you have a student body of 56,000 plus students, just adding one or two counselors doesn’t really make the difference, so I think they really need to be targeting equity-deserving groups.”

Looking ahead: new normal needed

Both Charlie and Anderson are in the last year of their respective programs. The finish line is in sight but they’re not quite in the clear yet. There were several times over the past few years when both of them made the choice to persevere instead of taking a leave of absence.

“I thought about taking a leave a few times because it’s just been so much more difficult to be successful,” said Anderson. “But I’m almost graduated now so I guess I’ll just power through this term.”

With COVID-19 restrictions being peeled away, Anderson hopes that people don’t forget the risk of getting seriously ill has not disappeared for students like her. She also hopes the support that immunocompromised students received during the pandemic doesn’t disappear either.

Similarly, as society continues to return back to ‘normal,’ Fuller wants people to remember the strain that the pandemic has placed on those with weakened immune systems and their loved ones.

“Every time there’s a loosening of restrictions, it’s a tightening of constraints for those who are immunocompromised, and those who love them.”