Chronic Illness Is a Real Part of College Life
By: Martha Burtis, Matthew Cheney, Robin DeRosa, Hannah Hounsell, and Natalie Smith
Several years ago, when the Interdisciplinary Studies program at Plymouth State University was just beginning to develop a new pedagogical approach to its customized major program, a young sophomore named Tiffany Richards walked into our office.
A highly successful nursing student, Tiffany could no longer continue in her program because she had been diagnosed with a terminal brain tumor, which meant that she could not get licensed to dispense medication as a nurse.
Despite the overwhelming challenge that this diagnosis presented to her, Tiffany was sure that she wanted to continue on learning, continue on in college at PSU with the friends and the teachers that she loved. We helped Tiffany create a new major in Patient Advocacy, but we didn’t realize at the beginning just how transformative her effect on our program would be.
As Tiffany worked through her courses, we realized that she needed significant accommodations in order to be able to continue learning through treatment and bouts of feeling unwell.
More importantly, we realized that she brought significant insight to her peers and her field as she engaged with academic work through the lens of someone fighting cancer.
We also realized that the accommodations she needed were often adjustments that would help every student who was facing or would face illness during their studies. (According to the Centers for Disease Control and Prevention, 60% of Americans have a chronic disease, and 40% have two or more.)
Students who struggle with these “disruptions” are not experiencing abnormal circumstances. The reality is that serious physical and mental illnesses affect many if not most of us over the course of our lives. For students who want to stay connected to their institutions and to learning during the course of their illnesses, institutions need to stop seeing these challenges as idiosyncratic or individualized, and start designing learning experiences around the reality of human illness.
Below are the real-life stories of those who have a first-hand understanding of this important issue.
Natalie’s Story: A Student’s Journey
Living with a chronic health condition is unbearably difficult. As a young woman with endometriosis I can say that with certainty. My first year at college began with fun and excitement, but quickly turned painful. I was missing classes and work to go to hundreds of doctor’s appointments. For months, I kept getting misdiagnosed and my pain was only getting worse.
During the months without a diagnosis I felt like I was a failure, that maybe I was making it all up or it wasn’t that bad. When you’re a young woman, doctors tend to brush it off as overreacting to normal pains, but eventually, I finally found a doctor who would listen to me and believe me. I walked into her office and within five minutes she told me that she didn’t know how I was still walking around, and that more than likely I had endometriosis. We started with minimal intervention hoping that would solve my pain, but unfortunately it only got worse. It got to the point I had to go in to get it all surgically removed.
When I woke up, I was told it was only stage two, but that it was the most adhesions for a stage two patient she had seen in a long time. The thing is, surgery isn’t some magic fix, but people expected me to be able to recover and live pain-free. I do live with a much smaller degree of pain, but it is still excruciating. I will have to get surgery every six or seven years, as endometriosis grows back and can’t be cured.
Being in college when I was being diagnosed and living with this condition was extremely difficult, and some professors weren’t very understanding. There were professors who would never give extensions or makeup work for me to complete. I was being penalized for being sick. It was also difficult when lecture classes didn’t post the presentations and the only way they suggested I catch up was to ask another student for their notes. This is not the easiest thing, especially when you are in a class with nobody you know and have spoken to none of them before.
However, there were also professors who were more than understanding. They knew that if I got up and left in the middle of class it wasn’t because I was bored, it was because I was in pain. There were professors who offered extensions and makeup work, who always asked how I was doing. There have been times where I have had to go for emergency lab tests, or last-minute doctor visits and these professors were always willing to help me stay on track and not fall behind. Instead of asking when I can do the makeup work, they asked if I was okay and told me not to worry about the missed class. They just wanted me to take care of myself.
The one thing I really want to be able to express is that chronically-ill students aren’t missing class just because. We hate that we have to miss classes to deal with our health. All we want is to be able to go to class every time without having to worry if we are going to make it through. We are here because we want to learn, and having a health issue that interferes with that bothers us, just as much as us missing class bothers professors. All we need is for our universities to understand that we can’t control this, and that all we really need from our professors is support and understanding.
We don’t want special treatment or easier workloads: we just want a chance to complete the course without being penalized for our illnesses.
Natalie Smith is a student at Plymouth State University.
Matthew’s Story: A Professor Reflects on Getting to ‘Yes’
As the director of an individualized major program, I have seen firsthand the value of flexibility for students facing situations that make a straightforward and traditional path through college challenging. Interdisciplinary Studies (IDS) at Plymouth State University gives students the ability to build their own majors, melding courses from at least two existing disciplines on campus to create something that otherwise doesn’t exist at PSU. Many students choose IDS because it lets them create their dream major; but a significant number come to us because standard majors have offered insurmountable obstacles to their success.
Many institutions have trouble imagining the full diversity of the student body. What, I wonder, would it mean if our curricula fully embraced the idea of universal design for learning? What would happen if we evaluated our institutional requirements based not on some imagined ideal of the healthiest and most able-bodied human being, but rather on the actual majority of our students. That ideal of a college student is a misleading fantasy in which every human being is always physically and mentally healthy, always capable, always financially stable. How might we redesign our institutions to serve the actual people who study, work, and live in them? Might we even start with the needs of our most vulnerable community members?
Before I became Director of Interdisciplinary Studies at PSU, I had many years of experience as a teacher, and I think I was mostly a compassionate teacher, but I had not yet begun to think about curriculum in the way I have since joining this program. In this job, I have had to think about students like Natalie, students of great passion and intelligence, but to whom the traditional systems offer more obstacles than rewards.
Previously, I had internalized a “take it or leave it” attitude — the requirements were what they were, and if students couldn’t meet them, then that was the fault of the students, not the requirements. Now, having seen the ways students blossom with the flexibility that our program allows them, I have evolved toward the attitude that created IDS at PSU: a culture of “yes”. If a student comes to us and says, “Can I do this thing I dream of doing?” our first response is: “Yes.” And then we try to figure out how to get to that “yes.”
There is no promise that the path will be easy, but that’s not what students are looking for — they’re looking for a path that is both invigorating and personally satisfying. They are looking for a path that lets them feel connected to the world through the work they do, and one that lets them be the person they are in the body they have in the circumstances of their actual lives.
Matthew Cheney is an Assistant Professor & Director, Interdisciplinary Studies.
Hannah’s Story: An Advisor’s Holistic Support
It’s absolutely true that developing inclusive classroom experiences, curricula, and pedagogy is necessary if we are to support real students. However, there needs to be holistic transformation in our universities if we are to design environments where all students can thrive. I think of the role that advising, student employment, student life, and residential life play in supporting real students. No matter what role a person serves in the university, they are a teacher, mentor, and resource for students.
My experience allows me to speak mostly to the role of advisors and student employment supervisors in supporting the whole student. As an advisor for the Interdisciplinary Studies Program, I quickly learned that academics is only a piece of the entire picture of the student experience. I am frequently helping students find solutions for their food or housing insecurity or fast funds for their financial needs.
Our office has a small satellite food pantry which is an offshoot of our larger, grant funded campus pantry. We stock this with non-perishable foods, as well as menstrual, hygiene, cleaning, and other essential products. Faculty and staff donate gas and grocery cards to us that we can distribute to students in need, no questions asked. The message here is that academic programs are dedicated to feeding and caring for students, not just collecting homework assignments from them.
As a supervisor, I have also made it my business to make sure that my student workers are housed and eating; our office has found fast housing for students and outfitted one of them with a microwave and mini fridge. I am sensitive to students who rely on the check they get from working in the Open Learning & Teaching Collaborative to afford food and housing, trying to offer options during long breaks or vacations.
At the very least, I am flexible with all of my employees by recognizing that with assignments, tests, extracurriculars, and scholarship applications, they all lead busy lives. I grant time off and skipped shifts whenever my student employees need it, no questions asked, because their job is not the most important thing going on in their lives. And that’s okay because I don’t construct integral work entirely on the backs of student employees.
Beyond basic needs and flexibility with students, I see my role as an advisor, supervisor, and ally. We talk about “hidden curriculum” in higher education, and we are often referring to the content we teach (and don’t teach) in our classrooms.
However, our hidden curriculum bleeds out of the classroom and into our administrative offices and takes the form of confusing policies, hidden requirements, and bureaucratic processes that are impossible for most students to understand and translate.
I spend a large percentage of my everyday helping students decode policies, communications they receive from the registrar or financial offices, and university requirements. I am happy to do this work with students, but I also wonder: what would it mean if we took a more student-centered approach when we develop these policies, requirements, and processes in the first place?
I could go on and on. I could talk about helping students figure out how to talk to their professors — helping undergraduates dance around the unfamiliar hierarchies within the university. I could talk about the invisible labor of listening to students, empathizing, holding space for their hardships, and how it feels when I don’t have a solution for them. I could talk about the tension between knowing when to advocate on a student’s behalf and when to encourage students to advocate for themselves.
What I will say is that I hope that, as we talk about what it means to design universities around real students, we look beyond curriculum and pedagogy. I hope that we involve those offices that we might not immediately think about as aligned with “student success.”
We are all teachers of students.
Hannah Hounsell is a Learning Advisor, Open Learning & Teaching Collaborative.
Martha’s Story: A Designer Looks Back on COVID-19 and Compassion
Last summer, as the PSU Open CoLab began to help faculty to prepare for a fall semester that we knew would be as unconventional and, perhaps, even more unpredictable than what we had all faced in 2020. COVID-19 had turned everyone’s realities upside down, but it had also brought into stark focus how many of our students were contending with a pandemic on top of existing challenges and vulnerabilities.
It wasn’t enough to orient faculty to technologies for remote or HyFlex teaching. It wasn’t enough to help them rethink assignments and activities that typically were completed in face-to-face settings. It wasn’t enough to introduce them to alternative ways of approaching assessment, given that students were likely to have varied and variable experiences.
All of this mattered, but all of this needed to be contextualized in a framework that helped faculty acknowledge the compounding nature of COVID-19. So many of our students were already vulnerable going into this crisis; they were going to need excellent teaching and support, but also flexibility, connections to resources and community, and understanding.
To that end, we developed the ACE Framework, a guide for teaching and learning during times of upheaval and crisis. ACE focuses on three core values: Adaptability, Connection, and Equity. Each value in ACE is composed of a series of practices, and for each of these we gathered together the best resources, models, and suggestions we could to help faculty design courses that could not only adapt to the unpredictable challenges of the coronavirus, but would also help students during this crisis in order to succeed.
ACE is not about any particular modality (HyFlex, hybrid, online, face-to-face), nor is it about any particular technology. While all of these topics may be mentioned in our ACE practices in some way, our goal was to forefront values over modality and technology and to center student needs in course design.
As we begin to see the light at the end of the tunnel of this particular crisis, in the CoLab we are well-aware that our students’ vulnerabilities will not disappear when COVID-19 case numbers come under control. Many of the practices we identified in the ACE Framework can continue to serve our students and faculty in the future, since we know that over the course of an education students are likely to experience all kinds of challenges with the potential to interrupt or derail their education.
We’re taking forward what we learned from ACE and thinking even more deeply than ever about how we can build models and frameworks for instructional design that are equitable, humane, and just.
Martha Burtis is an Associate Director & Learning Developer, Open Learning & Teaching Collaborative.
Robin’s Story: A Director’s Insights on Community-Based Transformation
This collection of stories isn’t meant to be a concrete set of “best practices” that you can use to make your courses, programs, or institution more adaptable to the real lives of your students who struggle with chronic or serious illnesses. (That’s not to say we couldn’t write that post!)
Since we first met Tiffany, we have been making adjustments in our program — following guidance from the fields of Universal Design and disability studies, in particular — to redesign our grading practices, office set-up and operations, course syllabi, and communication strategies.
When Tiffany passed away, we honored her by being ready for another student with a serious cancer who never had the chance to meet her; but when he enrolled in IDS, he didn’t have to ask for the kind of flexibility and understanding that would allow him to stay connected to us throughout his treatment.
Natalie, as you can probably tell from reading her words, is an extraordinary person. In fact, she’s likely to be the first beautifully-tattooed accountant you work with, and she will ultimately graduate from PSU with a graduate degree and an incredible record of academic success. And even though she is one-of-a-kind, stories like hers are far common for us to continue pretending that it’s an exception rather than a rule.
Your students will get sick. Some of your students will come to you having lived many years already with the pain or hardship of a chronic illness. Some will get devastating news in the midst of their time with you. We’re writing this to tell you that it will happen, that it’s already happening, and that you can start working now if you haven’t already to get your corner of higher education ready.
Listening to our students is how we can develop the new architectures and mindsets that will help us accommodate them. And it’s not just our students we need to listen to: it’s all of us. We all live real, human lives, and we all know the challenges of having to work, research, teach, and learn inside of institutions that don’t acknowledge that.
In the CoLab where Natalie, Matthew, Hannah, Martha, and I all work, it’s less about what we can do for students and more about helping higher education become a truly humane space where we can all work and collaborate in ways that don’t require the denial of our frailty or vulnerability — and the resilience and richness that comes along with it.
You don’t have to start with your whole university. You can start with your office. Your course. A conversation. But we are here to tell you that the reward is not simply that a single student might be able to persist in college; the reward is that we can start to see a future for higher education where our institutions truly support the real human beings who bring them to life.
Plymouth State University ’23;
Associate Director & Learning Developer, Open Learning & Teaching Collaborative;
Assistant Professor & Director, Interdisciplinary Studies;
Professor & Director, Open Learning & Teaching Collaborative
Learning Advisor, Open Learning & Teaching Collaborative