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Invisible Illnesses: The challenge of caring for students living with chronic illness

Coping+with+chronic+illness+can+bring+on+fatigue%2C+which+makes+it+difficult+to+carry+out+daily+tasks.%0AVictoria+Williamson%7C+The+DePaulia
Coping with chronic illness can bring on fatigue, which makes it difficult to carry out daily tasks.
Victoria Williamson| The DePaulia

Coping with chronic illness can bring on fatigue, which makes it difficult to carry out daily tasks. Victoria Williamson| The DePaulia

Coping with chronic illness can bring on fatigue, which makes it difficult to carry out daily tasks. Victoria Williamson| The DePaulia

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Managing one’s personal life with success at college is a difficulty that many empathize with, but for those who live with chronic illness and attend college, the balancing act can be even more taxing.

Universities have long sought to meet the needs of students who struggle with chronic illness. In 2004, former DePaul psychology professor Lynn Fuentes created the Chronic Illness Initiative, the first program in the U.S. created solely for the purpose of providing accommodations for students living with chronic illnesses.

“I have a son who has been really sick for the last 32 years. I wanted him to have a college education, but I knew it would be difficult for him because of his illness and that there were a lot of people in the same boat as him,” Fuentes said. “I put the program in operation, and we ended up with 200 students enrolled.”

According to Fuentes, part of the difficulty universities have had in understanding and helping students afflicted with these chronic ailments lies in their stealth and unpredictability.

“Many of these students with chronic illness look healthy from the exterior, but they feel very sick on the interior,” Fuentes said. It’s not like a sight disability or a mobility disability because that’s a disability you can solve at the beginning of term. For people with chronic illness, it’s always up and down — one week they might feel better and the next week they might be in the hospital.”

Psychology professor Leonard Jason was diagnosed with Chronic Fatigue Syndrome (CFS) in 1990, which made him become invested in understanding the illness. Sufferers of CFS experience long-term extreme tiredness which can make it difficult to complete daily tasks such as coursework or attending classes. Jason says there are other difficulties that students with chronic illness face as well.

“Not having insurance can be an economic hardship, just getting the medical treatment can be expensive. Also getting the treatment can take a lot of time,” Jason said. “The second issue is having pain or fatigue, (it) can make getting to classes very difficult. The third thing is that chronic illness can interfere with a student’s ability to socialize and stay out with friends at night, which is an important part of being in college I think.”

Jason says that he has had students in the past who had chronic illnesses, and any accommodations provided to them were largely due to communications between student and professor.

If there is no communication happening, then it can be hard for each party to determine and understand the difficulties the student is facing and how best to help that student succeed. There is also the student counseling center that a student can go to to get emotional support and the disability office at DePaul which can help students too.”

Fuentes said the program was successful overall, with the professors who participated gaining a better understanding of what students with chronic illnesses go through on daily basis.

“A lot of time people living with these conditions look okay. These are invisible illnesses, but if they are sitting in a classroom looking like everyone else, a professor might think that they are making it up because they do not want to do the work,” Fuentes said.

While the program has seen success, there were still unforeseen difficulties in creating the initiative.

“I thought if I had a good idea and explain it to people, that it would go well,” Fuentes said. “A lot of people at DePaul thought that if we had this program, then every sick person in the U.S. would come to DePaul, and this program will become very expensive.”

But according to Fuentes, the program did not grow uncontrollably,  remaining instead a focused program with  an enrollment of 200 students from 2004 to 2012.

Fuentes says she made another mistake by introducing the initiative as representing diversity.

“I believe chronic illness is a diversity because many people are discriminated against because of their illness,” Fuentes said.

Fuentes says when she tried to explain to students how those afflicted with chronic illness represent a diversity, she was met with blank faces and misunderstanding because people could not see the illnesses’ symptoms may not be visible.

In 2010, Fuentes was tasked with creating a plan to incorporate her program into the larger Center for Students with Disabilities (CSD), which was at DePaul established in 2012.

“There are a wide variety of conditions that students may have where the symptoms may be episodic, as well as of various duration.  The CSD works with those students, faculty, and others to ensure that reasonable accommodations are provided,” the center’s  director, Gregory Moorehead, said in a statement to the DePaulia.

While the responsibilities of Fuentes’ program were absorbed into the CSD, she still worries if the accommodations the school provides through the larger program are adequate.

“Students have complained in many, many universities about being ignored and not understood,” Fuentes said. “They would go to the regular disability office and not get what they needed, so my fear was that if they went back to the regular disability office, then those problems would resurface for them.”

Fuentes now works with Transformation Teaching, an organization which helps provide online education to those with chronic illnesses.

As someone who lives with a chronic condition, Jason has advice for students who are struggling.

“Get good medical care. Create a support system, maybe a nutritionist if you have trouble getting adequate nutrition, or a pain specialist for any widespread pain one might be experiencing, or a physical therapist for any mobility issues,” Jason said. “It’s important also to stay in close communication with your family and friends.”

5 Comments

5 Responses to “Invisible Illnesses: The challenge of caring for students living with chronic illness”

  1. Gunny Baker on May 7th, 2018 5:12 pm

    This is so frustrating. My own chronically ill child has wanted to go to college since her earliest years. I’ve watched her heartbreak as even disability offices have no idea to help a student whose disabilities are not obvious fixes. Chronic illnesses are unpredictable, often invisible, and can be debilitating intermittently. She wanted to become a history professor. Now she’ll have to get her degree online. We’re grateful for the option, but it’s not the same as being with fellow students!

    [Reply]

  2. Anon08 on May 9th, 2018 10:03 am

    I have a chronic illness and graduated from DePaul in 2008. I must say that all of my professors were beyond fantastic in understanding my issues (heck, one professor even let me sob in her office for 30 minutes after a particularly bad episode the night prior). I did have one issue with a teaching assistant (not many of those found in DePaul!) during the Junior Year Experiential Learning requirement, where I was treated with contempt and ridicule. Should have reported that incident to the Dean of my school, but alas.

    [Reply]

  3. Derrick D. Winding on May 10th, 2018 6:18 pm

    I am grateful to Dr. Lynn Fuentes and her Chronic Illness Program for making a place for me during my undergrad tenure. As a disabled military veteran with MS, even reps at the VA told me I would never be able to complete my degree. Thankfully, because of the support from Dr. Fuentes and the Chronic Illness fellow students, I will be graduating with my Master’s degree next month in Veteran/Disability Support. My 2011 CII cohort and I remain in contact. We are a family! It is a shame that it no longer exists. CSD has its place, but CII should be reinstated!

    Derrick Winding
    Double-Demon, 2011 and 2018

    [Reply]

  4. Michael E. Ottlinger on May 11th, 2018 9:43 am

    The Department of Justice has a great web site providing information about the American’s with Disabilities Act, ADA. The Act has a whole section covering “public institution,” which relates directly to students attending college, or other levels of education. Even more is expected of public institutions than private ones, though that observation should not by any means lead you to think that private institutions can get around these requirements. It also has cases available to read in which DOJ has settled with parties against whom claims of discrimination have been made. Such settlements describe the kinds of remedies the parties have agreed to and which DOJ will enforce. I think you will find that these cases are quite easy to read; they aren’t couched in obtuse legalese. You can get a very good idea as to the sort of measures DOJ expects institutions to consider when accommodating the needs of persons with disabilities. Bear in mind: this is the law and enforcement is very accessible and active. Institutions with deep pockets are expected to should more costs in making these accommodations than you might imagine possible.

    Reading this should give you considerable encouragement that help is available to you and/or your child. With the tremendously flexible new technologies we should see the need for travel to school greatly mitigated which opens the doors to many people who don’t have the stamina to get out two or three times a week, drive back and forth, walk across campuses, and then sit up for an hour or two. Videos also make it possible for them to watch the lectures at times when they are feeling more energetic. Other aspects of school requirements can also be addressed. One great limitation has been that students and parents really have a very modest knowledge of what can be requested and how to go about that process. It isn’t hard but some persistence, and perhaps some advice, or even intervention, from DOJ may be needed in cases where help isn’t very forthcoming.

    You can also call DOJ to ask questions. They are very responsive.

    ADA INFORMATION LINE
    The U.S. Department of Justice provides information about the Americans with Disabilities Act (ADA) through a toll-free
    ADA Information Line.

    800 – 514 – 0301 (voice)
    800 – 514 – 0383 (TTY)

    [Reply]

  5. Dennis on May 11th, 2018 11:20 am

    DePaulia makes education easy for those with chronic illnesses. It is understood that their education needs to involve personal development as well. DePaulia does their best to cater to those who need it most. Getting involved with Transformation Teaching shows that DePaulia does everything they can. They care!!

    [Reply]

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