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As more students enter higher education with chronic illness, a different kind of learning is required. (mischiru/flickr)

I recently received e-mails from a frustrated graduate student with chronic disease who was tired of administrative roadblocks at her particular school, and a distraught parent of a college student who was about to withdraw from another school because of her health. Both e-mails sought commiseration and advice, and both speak to the same issue: What happens when patients with chronic illness enter higher education?  TWEET

We might know how to accommodate hearing, vision, or mobility impairments on campus, but chronic pain conditions, autoimmune diseases, and rare diseases present very different challenges. Consider the student suffering from flares of Crohn’s disease or lupus, who may appear healthy one day, but whose symptoms are completely incapacitating the next. How do we accommodate students who can’t make it to class for longer stretches, have frequent medical appointments or disruptive hospital stays, or whose medications may make them drowsy or fatigued even when they are present?

Illness isn’t a free pass for incomplete work; it’s an extenuating circumstance that requires negotiation and mutual accountability.

It’s a shift that is taking place across the medical establishment as the population of younger adults with chronic illness continues to grow and we’re confronted with patients who need adult care and who are transitioning into independent management of their conditions. Thanks to better technology and treatments, pediatric patients with serious childhood illnesses like cystic fibrosis are living longer into adulthood, and at the same time, more young adults begin to manifest autoimmune and chronic conditions at this stage in their lives. According to a National Health Interview report, an estimated 7 percent of American youth live with at least one ongoing health condition that disrupts daily activities.

The very nature of chronic illness itself — it is largely invisible and unpredictable — is at the crux of the problem. Students with chronic illness are often grouped with students with learning disabilities or permanent physical disabilities, despite the differences in their needs, and in some situations, students and instructors are left to devise ad hoc policies.

I know firsthand how important disease education and communication are to this dynamic. As a lifelong patient, my entire student career took place within the context of serious illness, a relentless cycle of missing classes and catching up. I wrote papers and studied for exams from an ICU room, I chose courses based on how well they fit in with daily treatments, and I picked student housing based on its proximity to medical care. I was fortunate to have faculty and administrators who learned with me and worked with me, and I made it through. As a college writing instructor, I’ve seen a lot from the other side of the desk, too, from the panicked e-mails and queries for extensions from students and advisors to coordinating ongoing one-on-one help for students with medical challenges.

What might more robust administrative support look like? In 2003, DePaul University in Chicago launched the Chronic Illness Initiative (CII) through its School for New Learning. The now-defunct program served as a liaison, educating faculty about chronic illnesses and working with students to establish and maintain realistic timelines to complete their education. Withdrawing from classes not only slows down academic progress, but can also put students in financial aid jeopardy if they drop down to part-time status.

There is much we can extrapolate from this model. First, students with chronic illness need to advocate for themselves. If I know there is an ongoing medical situation, I can help formulate a plan that minimizes stress and allows students to focus on their health first. Understandably, not all students want to disclose illness or register with disability services and be thrust into the role of educator, but with documentation, instructors have a lot more discretion to help students with illness succeed in the classroom.

For faculty, one of the most difficult challenges is to be accommodating while still maintaining the classroom’s integrity, and the integrity of the student’s education.

What must follow is ongoing communication, particularly if a student’s health status changes significantly. Being proactive also goes a long way; for example, some students struggle with early classes, while others know their fatigue or pain is much worse later in the day and earlier classes are better options. Early or priority registration makes a lot of sense for these students. The upsurge in university-based online courses is particularly promising, since these courses allow students to participate even if their physical symptoms worsen.

For faculty, one of the most difficult challenges is to be accommodating while still maintaining the classroom’s integrity, and the integrity of the student’s education. Working with students to “triage” deadlines and assignments so they can stay enrolled without putting their health in danger in the process is important. Illness isn’t a free pass for incomplete work; it’s an extenuating circumstance that requires negotiation and mutual accountability.

For now, the most important collaboration often comes between individual instructors and students, with that critical moment of translation and acknowledgement. With increased awareness and understanding of chronic illness, students and faculty can better access the administrative structures already in place and hopefully, they can have a larger role in shaping future policies.

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  • Duncan Cross

    Thanks for this, Laurie. Having attended a half dozen schools in one form or another, I know that most colleges and universities have no idea how to adjust to a student with a chronic illness. The lack of support was, in my last school, devastating to my education and career. It’s also worth mentioning that since 2009, chronic illness is legally a disability for which schools are required to provide reasonable accommodation.

  • Leslie Rott

    Spot on, Laurie! This is what I’ve been trying to say for years. Many chronically ill students view themselves and disabled, and even if they do, disability services offices are not equipped to deal with the constantly changing needs of chronically ill students. And you know I was a huge supporter of the DePaul program, but it didn’t make the cut when it came to meager funding. After struggling through a PhD program where I felt I didn’t belong due to my illnesses, I have found my home in the health advocacy master’s program at Sarah Lawrence College, where my end goal is to be an advocate for chronically ill students in higher education. I know, however, that my story is unique, and many chronically ill students become fatalities of the higher education system. That needs to change!

  • Isobel

    My university does well with this situation and yes, as the article suggests, it’s demanding for professor and student both. Many students are adamant about not “admitting” illness, often thanks to atrocious treatment in their high schools and sometimes their families (high schools have to get on this immediately, as earlier failures of understanding can set someone up for a lifetime of failure, no matter how much help is later available). But the successes are heart-warming, and make an immeasurable difference in people’s lives. Now if only professors with chronic illness could get some recognition and accommodation….

  • Anon

    As one if these students, I can attest it has been a struggle, especially when starting at a new institution. However, establishing my hard work ethic and dependability early on has helped professors (for the most part; there are some who will never be understanding or cooperative) being willing to make adjustments and work with me.

  • Debbie Nicholson

    This is one reason I could not attend college on VA education benefits recently offered. Full time attendance was required.

  • Rachel

    Thank you! I’m living with several illnesses and in grad school. This semester I’ve become so sensitive to artificial scents that I’ve fainted (on the train, in NYC). I simply can’t function when classmates wear cologne or perfume. While the professor has brought this to everyone’s attention, it’s still happened. I think it’s worth noting that part of the work for us 20-somethings as students is educating our peers as well as our professors- and sometimes counting on THEM to do the work.

  • Rosalind Joffe

    Thank you,for writing this. I’ve always been so struck by the paradoxical nature of chronic health challenges. The numbers who live with the challenges that debilitating symptoms create simply don’t make sense when stacked against the support services that are available at any age ,except ‘old age’.. Which brings me to why THIS is important.

    I first developed chronic illness in my late 20′s . But I’ve worked with too any clients whose onset started in their college years or earlier. And each expressed the sadness and dismay to be so alone and worse, to face the kind of obstructive forces you describe.

    I’d add to this that there is a woeful lack of information and support regarding planning and creating work when living with health challenges. That’s why I created a program to address just this on my website (ci.coach.com) — to give college students and recent graduates the tools that they need to live as productive lives.

    We can only hope that more voices like yours will speak to this issue.

  • Para Las Fridas

    Thank you for this piece. It is really the first of its kind that I’ve seen. As a student with chronic pain and a volatile and ever-changing disability, sometimes not even registering with disability services can safe-guard an individual from the repercussions of having an illness while trying to accomplish educational goals. As each university has its own guidelines for administering accommodations, I often find that discretion is left largely to the professor who very often has had little training in the way of understanding illness and disability. For example, if an accommodation letter requests that professors allow for absences due to medical necessity, very often students are still held to the attendance policy stated in the syllabus. Students are often left contesting medical demerits after-the-fact or having to be put in the awkward place of reminding professors of an accommodation letter which is both intimidating and horrifying. Asking disability services to advocate on your behalf can sometimes just add fuel to the fire. Furthermore, disability services are often reticent to get involved because of the relationships they need to foster with professors and departments. I am very thankful that you have started the long overdue dialogue on this issue and so many other issues that shape the lives of those that are chronically ill.

  • Rebekah Fowler

    I’m late coming to this article, but glad I found it. It’s a very informative and well-written piece. I’m an assistant professor at a public university who has seen an increase in the number of students who need accommodations and extra time to complete courses. In the last year, alone, I’ve had four requests for extensions and incompletes in my classes, three of which I have granted (the fourth took a medical withdrawal). All of them were related to health concerns (mental/emotional and physical). All of them have been chronic and unpredictable.

    What has driven my current research and desire to better understand this issue is concerns I’ve had. My concerns are, essentially, twofold: 1) how do we ensure that students with chronic illness are getting what they need while also ensuring that their need is legitimate, and 2) what happens if/when incompletes become a hardship on faculty members?

    My first instinct is always to help the student, and for the recent cases I’ve faced, each of them had documentable illnesses or disabilities on file with Disability Resources (our Dept. Chair requests that we not offer incompletes to students who do not have documentation). I know that, practically speaking, most students will not request incompletes because it does take more time and could end up costing students more money due to extended enrollment. However, I have had students in the past who have abused the offering of the incomplete (granted, not for documented health reasons; these were behavioral/situational and accompanied the “Oh, crap! I’m going to fail!” moment) and this has made me leery of agreeing to them.

    Also, depending on the amount of the class the student needs to make up, incompletes can start to look like independent studies, with the need for more intensive, one-on-one faculty oversight (at my institution, faculty don’t get paid for independent studies, BTW). I know many instructors who leave the students to work on incompletes on their own, at their own pace, in order to avoid work overload, but this starts to read, to me, more like a correspondence course than a course for college credit. Maybe this is okay. But, if an instructor wants to ensure that the student is getting the college education that s/he deserves, the time taken to complete the course can become more time-intensive than faculty may have anticipated, which, in a university like mine (4/4 teaching load, heavy service expectations, and research production), can become a workload issue. This, in turn, can cause more faculty to refuse incompletes.

    More support is needed, both for the students with chronic illnesses and conditions and for those who work with them.

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