Young & Immunocompromised: Interview with Hannah Hardiman

Photo by Anna Shvets is licensed under CC0

Throughout this pandemic, it has been difficult for some college-aged students to understand the gravity and lethal nature of Covid-19, despite it having killed over 400,000 people in the United States. As someone with chronic illnesses and who lives with an immunocompromised parent, it has been infuriating at times to see many of my college-aged peers refusing to follow public health guidelines. Many my age want to socialize with friends the way they were accustomed to before the pandemic. To an extent, my peers’ actions are understandable. Much of the media coverage about who is most at risk for suffering severe cases of Covid-19 lumps the “elderly and immunocompromised” together. It is also worth noting that many young people do not know what it is like to deal with a chronic condition and have their daily activities and routines impacted by it. 

Because of this disconnect, I interviewed a fellow student, Hannah Hardiman, who has Crohn's disease (an autoimmune disorder). Hannah is a fourth year in the College of Arts and Sciences double-majoring in Cognitive Science and Psychology. She is also the Outreach Officer for the organization Chronically Ill and Disabled Cavs (CIDC), which largely acts as a support group for people with chronic conditions and disabilities, though they have also been involved in advocacy.  I talked to Hannah about everything from Covid self-care, to actions of able-bodied peers, university responses, media portrayal of Covid risk, and healthcare policy. I hope this interview will be enlightening and provide a voice for the young and immunocompromised students who often are not receiving one. 

The following has been edited for clarity.

Anna Osborne: So, I reached out to you because of your involvement in CIDC. What has your involvement in the group been like for you? What have you been able to do, and what are your favorite parts?

HH: So, I’ve been just a general member for three of my years in college. I remember going to my first meeting my first year, and I was super nervous about it because I [was thinking] “I don’t know anyone”, and the transition to college was really hard. But it’s been really nice, and it’s definitely been a source of community and finding people who really understand what it’s like experiencing college with a disability and/or a chronic illness. It was also nice my first year because there were a lot of older members who knew the ropes of SDAC (Student Disability Access Center) and everything to help me. And last year was really awesome because the president last year, Ashley [Heuser], was a huge proponent of having us learn more about disability - not just our own individual experience, but disability and the disability community as a whole - so she advertised a lot of different events we could go to to learn more. I actually ended up taking a class with her [where] she was the T.A, and Mausam [Meta], who’s now the president, last semester, Disability and Contemporary Society, which was super interesting. I learned a lot about the disability rights movement, disability history, and disability and where the movement is now. I had no prior knowledge or experience with that, and I really learned a lot and enjoyed that. And now I’m the Outreach Officer, which has been really awesome, connecting and meeting a lot of new people.

AO: What class was the department in?

HH: It was interdisciplinary (INST 2020). Professor [Rupa] Valdez is in the [engineering systems and environment] department. Every few years she teaches a class that’s not really related to that, and it’s super awesome and really interesting. We had so many guest speakers, including Judy Heumann, one of the big advocates for the passage of 504 into law, [a] very important person in the disability rights movement. We had a lot of different guest speakers and learned a lot. It was really cool.

AO: As an immunocompromised person, or even just a person during the pandemic, how have you been handling it on a personal level [any self-care go-tos]?

HH: Actually it’s been quite interesting. There was this girl named Cameron [Lynch]. I didn’t know her at all, but she posted this letter on Instagram, and it was basically a letter to the general public. She started this support group after this letter was released on Instagram, and I commented on her post saying [something] like “This is really cool, I relate to a lot of what is being said.” And she messaged me and said “Hey, I’m starting this support group for immunocompromised college students, would you like to join?” And I joined that group, and it’s been awesome. I think initially it was very frustrating when people were like “Oh it’s [Covid-19] not that big of a deal” and then it became a big deal, and everyone was like “ Oh we’re going to stay inside, we’re going to be good”, and now it’s back to “Well this is normal, we’re just going to wear masks and go about and do what we normally would have.” It’s really frustrating, especially being a college student. I know there’s a lot of people still going to bars and having parties, which don’t get me wrong, I think we’d all love to do that, but it’s just not the time for that. And it’s just frustrating, so it’s really nice having a group of individuals who very much understand the frustrations and are experiencing the same feelings and [having] similar experiences.

AO: What kinds of adjustments or extra precautions have you had to take to stay safe, if any, that differ from your non-immunocompromised peers?

HH: So I decided to come back to UVA, [but] I think some people who are also in the group decided to stay home. And the only reason I was comfortable coming back was that my roommates agreed to a lot of things that we would do as an apartment. We don’t really let anyone into the apartment that doesn’t live here, [with] a couple exceptions, but for the most part not at all. Also, if [we’re] around people who [we’re] not living with, [we wear] masks and [stay] 6 feet apart and preferably [are] outside, and wash [our] hands as soon as [we] come into the apartment, and [we] don’t touch anything [before washing]. That’s pretty much what we’re doing. I’m sure some [immunocompromised] people are doing more, some people are doing less, but that was the only reason I felt comfortable coming back, that my roommates agreed to all that stuff and I have my own bedroom and bathroom.

AO: I actually based one of my questions around Cameron’s group, because a USA Today article featured her and another student who helped start the group, Samantha Price. They’re from Virginia, and they mentioned where they went to school [Cameron goes to the College of William and Mary and Samantha goes to the University of Mary Washington]. Some of their schools’ policies were mentioned as being in violation of the ADA (Americans with Disabilities Act), because they were forced to change classes if they couldn’t go in person. UVA was mentioned in the USA Today article as at least offering the vast majority of their classes online, but is there anything UVA could be doing better right now?

HH: I think that’s a hard question. I think classes-wise, they’re being very accommodating for the most part. I think for other students with other disability needs, online is not necessarily the best platform for them, but I think for immunocompromised students, having the option for pretty much every class to be online was very helpful. It’s a very complex situation. They did give everyone options to not come back, which I think is really good. There’s the whole question of “Should they have brought people back?”, which is a very complicated situation. I don’t know off the top of my head specifically anything they could be doing better, but I feel like everyone could be doing better by just staying home and not going out, but that’s not possible, so yeah, I don’t know, it’s very complicated.

AO: No, I mean this isn’t an easy question. There’s no perfect answer. Unfortunately, there are harder questions [after this one].

HH:  I [also] don’t want to speak for Sam or Cameron. The [USA Today] article was written because students who could not safely come back to school to learn were either having to risk their health to go to in person classes or having to drop classes and switch into other ones that were offered online. Because of the limited option of online classes, it was changing some people’s graduation trajectory and ability to graduate on time. And if I was understanding it correctly, it was a violation of the ADA because the schools were able to pull off online classes in the spring - all online classes - so the fact that they were not willing to do so in the fall was why it was a problem. But UVA did offer classes online so we were lucky in that aspect. 

AO: I’ve noticed a frequent trend in the [mainstream] media where they talk about who is most at risk for experiencing severe cases of Covid-19, and they lump the terms “elderly and immunocompromised” together. To me, it makes it seem like the elderly are the only people capable of having conditions where they have to closely monitor their health, even regardless of the pandemic, and I wonder if it’s contributing to increased attitudes of invincibility among college-aged people. I was wondering if you agree with this assessment, and if there are other examples where mainstream media seems to forget about young, immunocompromised people.

HH: I think it is hard for college aged-kids to think very far, like 5-10 years, into the future. And I think specifically for health, people with chronic illness know what it’s like to be diagnosed with something they had no control over getting and that you also don’t really have a whole lot of control over - at least for me, other than taking my medicine and watching my symptoms - how you feel. And I think it’s really similar for Covid, for why immunocompromised students may be taking a more cautionary perspective. Not only [that our] complications may be more severe, but also we have the experience of having doctors [say things] like “Well, this is all we can really do” and “We don’t really have all the answers for you.” I think other people don’t necessarily have that perspective and realize [that with] Covid they don’t really have a whole lot they can do. They don’t know long-term consequences of this, and there are things you can do to prevent getting it, period. And I think people just don’t have the perspective of being sick for an extended period of time, and, for me anyways, it’s just not worth it. It’s not worth risking going to a party and having one fun night for the possibility of not feeling well for a while. And I think lumping immunocompromised and elderly together initially really did contribute to college aged kids’ feeling of invincibility. I don’t know if you saw on Twitter, but [during] Midsummers, some guy made some comment that people needed to “stop assuming that everyone was living with their grandparents; it’s fine to go out and have fun.” I think that the way the media is portraying it when they’re like, “Oh this person, this elderly person with chronic illness” or, “This person with no preexisting conditions”, it makes it feel like...I feel like everyone should be being careful, period. I don’t think it should matter how old you are or if you have a preexisting condition or not, and I think that the way the media is portraying Covid, and how they describe the patients with it, I think contributed a bit, if that makes sense.

AO: So this is another hard question: There are a lot of conversations now about healthcare policies and access in the United States, because so many people are being hospitalized and are suffering from long-term chronic health problems due to Covid-19, especially with cases, I don’t know if you’ve heard of this term, but like “long-haulers”, having symptoms that are not going away. Because of this, more Americans, even people who didn’t have preexisting conditions that made them more vulnerable to Covid, are going to face problems that many people with chronic illnesses already do, like high costs of healthcare, lack of insurance coverage, [and] lack of access to general or specialized healthcare. So: this is such a hard question, but do you have any ideas about how we should go about approaching these issues? Any answer’s fine.

HH: So there’s definitely a huge conversation going on just because the case for the ACA (Affordable Care Act) is being heard in the Supreme Court in November, and also the confirmation hearings [are] going on for the new Supreme Court Justice. I go to a lot of doctor’s appointments, [and] my medicine is incredibly expensive. I think without insurance, my medicine is either about $12,000 or $16,000, one shot, and I get it every two months. Because I have insurance, and with insurance there’s this co-payment card you can get [where] you have to pay $5 for the shot, but without insurance you have to pay this full price. Which is ridiculous, and that’s just medicine. Then there’s doctor’s appointments, [so] the fact that there’s conversation going around about that [coverage] potentially going away is really scary because I don’t know how I would afford to live, honestly. And it’s also really disheartening because it kind of feels like my life is in people’s hands who don’t know me, don’t know my experience, and it kind of seems like they don’t care, which is really hard. It would be great if healthcare was not so expensive, because a lot of chronic illnesses are like...there is nothing you could have done differently necessarily to not have gotten it. And if there was, the research is not far enough ahead to know what that difference would have been. And so it’s essentially like “Oh you just pulled a bad hand I guess and now you’re stuck with these costs.” [So] not getting rid of the ACA would be great. I think even beyond the ACA there’s more that could be done to lower healthcare costs. Like for insulin, why has the cost skyrocketed in the past couple years when insulin itself has not changed at all? [All so] pharmaceutical companies can make more money. It doesn’t make any sense. 

AO: If you had anything to say to current attitudes about being young and immunocompromised, whether from the media, fellow students, politicians, university policy, whatever, what would you want people to know, and what should they do?
HH: I guess I would just really like people to consider other people besides themselves that this [Covid-19] could have an impact on. This is very much a community effort. It’s not all about what you want. We all want it to not be like this, I would love [for] it to not be like this. But unfortunately that’s not the reality, so it would just be really nice if people considered how their actions are indirectly affecting other people. Or directly.