Emma Adelstein and Avani Kabra wrote this piece for the Tufts Daily (May 10, 2021) in an attempt to highlight the experience of a student with chronic illness at Tufts
Can you imagine, for a moment, what it would be like to be invisible? Yes — invisibility is often people’s superpower of choice, but what if it wasn’t a choice? Our names are Emma and Avani and we are two people who know what it’s like to feel invisible. To our friends, professors, coaches, peers and often the administration, we appear to be perfectly able-bodied — from the looks of us, no one would think that we both manage a lifelong chronic disease.
Having a chronic illness is something that impacts each part of your life, every day, without fail. Currently, 7% of college-aged individuals live with a chronic illness. This means there could be over 400 students living with a chronic illness at Tufts, often invisible to the naked eye. In addition to balancing academics, extracurriculars and friends, these students are also balancing disease management. This involves frequent doctors’ appointments, picking up prescriptions, dealing with insurance, coping with chronic pain, handling daily symptoms, self-advocating and managing the constant wear that a chronic illness can have on mental health. These students are in our classes, on our sports teams, in our clubs and are even some of our friends. These students are us.
We both have Crohn’s disease, a form of irritable bowel disease, which is a chronic illness involving inflammation in the digestive tract. Crohn’s is an autoimmune disease, which means that the immune system attacks the digestive system. There is no cure, and it is a lifelong diagnosis. Living with IBD involves daily symptoms of intense stomach pain, extreme fatigue, joint pain, side effects of heavy medications, depression, weight loss and more. We both were diagnosed with Crohn’s in middle school and now, people are often shocked to learn we manage something of such magnitude. In all honesty, we were shocked when we met each other and learned that the other had Crohn’s. It was a first for both of us — having another friend with Crohn’s, that is. After being thrown into college with everyone else, we quickly learned what support, or lack thereof, existed on campus and realized there was no way we could be successful without the support of the other.
At the moment for students with chronic diseases, Tufts’ most accessible resource is the Accessibility Services through the StAAR Center. These services are supposed to help students manage illnesses and receive support. According to their website, Tufts “provides reasonable accommodations to students with disabilities … The StAAR Center coordinates academic, housing and other accommodations as needed.” While the intent and spirit of the StAAR Center has merit, it turns out to be more difficult to attain support in reality.
The process of getting accommodations is a long one — perhaps rightfully so if the accommodations were up to par with what students need. To begin with, students are not even guaranteed to receive accommodations from their professors. Academic accommodations can be phrased as recommendations for professors, not requirements. In an accommodation letter that allows for flexibility with absences, the StAAR Center wrote that it “[defers] to the professors as content experts” in deciding the exact number of absences allowed. This implies that professors know how to best meet the needs of each chronic illness in each student — a task impossible for anyone. We can both speak firsthand to how detrimental this type of inflexibility can be. Crohn’s is a condition that can have you smiling in the morning and bedridden with pain by the afternoon. As of now, the StARR Center’s recommendation that professors accommodate their students is not enough. While the StARR Center does what it can, we have identified a gap in Tufts’ institutional support systems. There is a type of support that is missing in the lives of students with chronic illnesses.
Second, once students are given accommodations, they are generally not individually contacted again about ongoing academic, housing and dining accommodations. Students with chronic illnesses have symptoms and flare-ups that require evolving care over the course of the semester. The burden should not be placed on the student to constantly reach out for extra help, especially during times of illness. To begin with, everything must be student-initiated. If this pandemic has taught us anything, it is that students who are ill deserve flexibility and support. For students with chronic illness, this flexibility and support must be maintained throughout their college experience. Other universities, such as Tulane University, provide case managers for students with chronic illnesses who support and serve as advocates for them. At Tufts, the burden falls on the students to advocate for themselves.
Lastly, the actual accommodation the StAAR Center provides is simply not enough to meet the needs of some students with chronic illnesses. Speaking from personal experience, we have both requested more accommodations than we currently have and we have been met with resistance — and rejection — when advocating for what we need.
There are some overarching policies, such as the policy that insists accommodations do not include reductions in meal plan requirements, that are thoughtless and unnecessary. For some students, perhaps a reduction in meal plan so that they can afford to spend money on foods they can actually eat may be beneficial for them. Tufts does not provide this flexibility or nuance in its policy, ultimately hurting its students. We should all know that Tufts is not a “one size fits all” type of place — nobody wants it to be. Having overarching, nonnegotiable policies concerning student wellness is a problem.
We have both been frustrated with the lack of institutional support for students with chronic illnesses. This frustration with the administration is compounded by the fact that there is no sense of community for students living with chronic illnesses or a space for students to voice their struggles. After finding support in each other, we questioned why it is such a rarity. This year we began the process of creating an organization called IBD University, a place for shared resources and community for college students with IBD.
We want to share our story so that other people do not feel like they have to tackle this isolating disease alone. On our website, we will have a plethora of resources, spanning from nutritional resources that help people develop a diet that works for them to advice about talking to professors about IBD and accommodations. In the future, we hope to include in-person events for students to meet with each other and relate to shared struggles. Ultimately, this is an organization for young people with IBD built by young people with IBD. Check us out at https://www.ibduniversityinc.org/ and spread the word.
Whether you have IBD, a chronic illness or are an ally, we hope you walk away from this article thinking twice before judging someone — you never really know what it’s like to walk a day in their shoes. After all, it’s easier to be invisible than people think.