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

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

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.”