Immunocompromised students find support among one another online

HESS: Madisyn Hess, shown in 2019, said she has not seen many of her friends in person since March. Tommy Wozny via The Washington Post

Restrictions began to relax. Restaurants reopened their doors. And, slowly, people crept out from their homes in the middle of a pandemic.

But Madisyn Hess, 21, a senior at Christopher Newport University, still hasn't seen many of her friends in person since March. Hess, from McGaheysville, Va., is paralyzed from the waist down. Her lungs are damaged.

"My diaphragm is partially paralyzed, so respiratory illnesses are very dangerous for me," said Hess, who is studying psychology. "Flu season, pneumonia season, I'm already at high risk."

Hess' school in Newport News, Va., like hundreds throughout the country, reopened in August for a mix of in-person and online classes. Many of the students who have returned are eager to restart their social lives. At CNU, officials reported six active cases, all students, on Friday.

"I've been invited to a few parties, which, obviously, I declined," said Hess, who lives in an off-campus apartment with her boyfriend. She cannot risk contracting the novel coronavirus. "It's just not in the cards for me this year."

It's a lonely feeling, she said. Until she found other women like her – all college-age and much less willing than their peers to flout public health guidelines because of their preexisting health conditions. They meet weekly on video chats, provide updates through group messages and help one another navigate the pandemic, the school year and friends who do not always understand why they cannot party or eat at a restaurant.

"I already felt disposable, in a sense, by society. And now it's just even more reiterated," Hess said during a support-group meeting. "It's so refreshing to talk to people who get it."

Venting frustrations

Casandra Paiz, a 22-year-old senior at Bryn Mawr College, is taking her classes remotely from her family's home outside Chicago. She has asthma and fibromyalgia.

Paiz said the support group gives her a chance to vent. "We can rant for like two hours straight," she said in an interview. Bryn Mawr, in suburban Philadelphia, has administered 1,042 coronavirus tests since Aug. 26, and one came back positive.

The rants range from frustration with friends to complaints about the ways their schools have reopened. Cameron Lynch, a William & Mary sophomore who started the support group, got the idea after posting a letter on Instagram that outlined her frustrations. The sociology major has Type 1 diabetes, celiac disease and a form of muscular dystrophy.

Dozens of students took notice – they commented on Lynch's post and reached out to share their own stories. So the 19-year-old created a digital space for them to connect. Samantha Price, a junior at the University of Mary Washington with Type 1 diabetes, helps coordinate the meetings.

Lynch dialed into a recent support group meeting from her parents' flat in London. She was knitting a sweater.

"I finally found an internship," Lynch said. The women cheered. "My school is not doing all-online classes, so I've had to drop like half of my classes." She's interning, remotely, at Disability Rights UK, an advocacy organization.

"A normal cold will kind of knock me out for a couple of weeks, so I can't imagine what COVID would do to me," Lynch said in an interview. She decided to take her classes, also remotely, from London.

Lynch said she's had to drop classes that would not meet online, a common experience for students who are hesitant to return to the classroom. She and Price this summer wrote a letter to college leaders in Virginia, asking them to make every course available online.

"Our greatest concern is the lack of equitable learning solutions for this high-risk population," the letter said. "Without remote learning options for all their classes, hundreds of immunocompromised students are being forced to either risk their health and attend in-person classes or make last-minute changes to their carefully designed schedules to switch to a limited variety of online courses. Students shouldn't be forced to make such a choice."

The University of Virginia is offering remote options for courses being taught face-to-face. Many other schools in the state are not.

The women who joined a recent support group meeting discussed their schedules and lamented seeing their friends post party pictures on social media.

"The saddest part is that they're not even ashamed of it," said Price, who's taking classes from her parents' home in Fairfax, Va. "These are people that are supposed to be our friends."

Hannah Hardiman, who's in her fourth year at U-Va., agreed. "It just kills me," she said. Her university has reported more than 280 cases of the coronavirus among students and employees since Aug. 17.

Coronavirus cases have surged on campuses such as Temple University and Indiana University, where nearly 800 students living in communal housing – including Greek life housing – have tested positive. Officials at James Madison University, worried about an increase in positive cases and a potential shortage of isolation beds, suspended in-person classes for the rest of the month.

Schools promised to enforce policies to keep students masked and distant, but it's proved difficult to consistently monitor thousands of young adults. Students do not just come to campuses to take classes and use the library. They also want to interact.

Hardiman, from Fairfax, said she does not blame people her age for wanting to be social – many of them have spent months away from one another and in their homes away from their friends. But she wishes they'd consider people like her, who are more likely to have serious complications with the virus.

"What's frustrating, more than anything, is the disregard for other people," Hardiman said in an interview. "I think this is very much a community effort to slow the spread and protect everyone in the community."

Hardiman, who is taking a medicine that suppresses her immune system, decided to move onto campus. She has three roommates, friends who understand her health condition and have agreed to follow the rules to keep everyone safe.

"It's definitely hard going through college without some sort of relief or way to connect with other people," she said. "If I had stayed home, I definitely would have been missing that."

A place to unwind, ask for advice

The community she's built through the support group has helped Hardiman and the other women settle into the new school year. The weekly video calls are a place to unwind, vent and ask for advice.

"I'm in pain all the time," Lynch told the group. "I live in a small flat, so I can't really do at-home workouts."

Paiz recommended anti-inflammatory foods, yoga and turmeric supplements.

"We've had to fight our medical problems since Day 1, and not many people have had to do that," Paiz said in an interview. The support group "has been really helpful, in terms of having people thinking similarly to me, in terms of COVID and being an immunocompromised person."


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