Katie Anthony had to take a medical leave from college before returning this spring to Iowa State University as a part-time graduate student and teaching assistant.
To date, the 25-year-old woman from Cedar Rapids estimates she’s missed almost half the term balancing her studies with debilitating bouts of cyclic vomiting syndrome. People with the condition, commonly known as CVS, can end up vomiting as many as seven times an hour for half a day.
“I would have to walk into these professor’s classes and be like, look, I’m going to miss more of these classes because if I don’t, I’m going to be throwing up in your class,” Anthony, seeking a master’s degree in journalism after earning her bachelor’s degree at Simpson College, said.
“I don’t know if I’m going to wake up tomorrow and be in a full-blown vomiting cycle. Or if I’m going to wake up Monday and be completely fine and able to go to class.”
Conditions like Anthony’s are called a hidden disability or invisible illness. These diseases can range from chronic illnesses, such as Crohn’s or POTS (postural orthostatic tachycardia syndrome) to learning disabilities, such as dyslexia or ADHD, or even mental illnesses, like anxiety or depression.
While challenging for the students, the illnesses also challenge colleges and universities that deal with disabilities rarely encountered but which drastically impact how students deal with their studies, an IowaWatch/Simpson College journalism report reveals.
“We’re accommodating, which means we’re leveling the playing field for them,” Joy Brandt, associate director of student success and disability coordinator at Grand View University in Des Moines, said. “We’re not changing anything or modifying, so you’re doing the same work. You’re receiving an accommodation to level the playing field so people can see your true potential.”
The students fall under the “invisible” category because they can walk across campus and sit in class without appearing to outsiders to struggle with anything. Yet, the illness can hinder a person’s work, education or social life.
Exact counts do not exist for Iowa college students but an increasing number with invisible illness and disabilities pursue higher education as each new school year starts, school officials, students and faculty at several Iowa college and campuses said in interviews for the IowaWatch/Simpson report.
A 2011 study by the American Academy of Pediatrics reported one in six children were diagnosed between the years of 2006 and 2008 with a developmental disability that could be called a hidden disability. These disabilities require increased health and education-based services.
DEALING WITH THE DISEASES
University of Dubuque sophomore Amanda Harrop said she doesn’t remember much of her senior year of high school. A Clinton native, Harrop, 20, lives with postural orthostatic tachycardia syndrome, or POTS.
For nearly two years from senior year in high school into college life, POTS controlled her daily schedule and knocked her into a coma-like state for up to an hour and a half at a time.
“I have chronic fatigue, fibromyalgia, chronic dizziness,” Harrop, a biology major with a minor in chemistry, said. “I can’t exercise for very long periods of time, but in the last year I’ve been working my endurance up. There was a point in time where all I could do was lie on the couch.”
Harrop worked with university officials to find living space because her sleep schedule, which included keeping her blood sugar at a normal level and a 9:30 p.m. bedtime, conflicted with the schedules of other students in her freshmen residence hall. The college helped her move into housing for upper classmen, where she could get quieter nights and better rest.
Belmond, Iowa, native Aimee Loats, a sophomore at Simpson College in Indianola, doesn’t show any outward sign of being sick, but living with Crohn’s disease has had a drastic impact on her life since she was 10 years old.
One bad day of Crohn’s easily can turn into a few more days of being bedridden. During hard times, Loats, 20, estimates she misses three to four classes a week. That makes maintaining class assignments and laboratory work for her biology major demanding when most labs are covered only once in a semester.
“Having the college load is a little bit different than high school. In high school you can make up things way faster,” she said. “Here, if you miss a day or two, you miss a lot of material.”
Loats took a medical leave from college midway through last fall’s semester but returned in January 2015 as a full-time student. She continues to pursue a degree in biology because she has a passion for medical-related studies but Crohn’s will continue to have an impact on her.
ACCOMMODATING THE STUDENTS
The students may seek class accommodations in order to continue studies while dealing with illnesses.
Donna Musel, Buena Vista University’s disabilities coordinator and Center for Academic Excellence director, said accommodations can include auxiliary aids such as note takers, interpreters and assistive listening devices. Others include revised class schedules and timetables for getting work done and other methods that help a person with a disability learn at a college level.
Many students do not seek the help, though, school officials interviewed for the IowaWatch/Simpson report said. Tracking how many is difficult while they fly under the radar.
Musel attributed part of that to individual experiences seeking accommodations in high school, which were negative. “The thing (students) say most often is they want to be ‘normal’,” she said.
Pride kicks in for many students. “They’re reluctant to use the accommodations at first, because they come to college and think, ‘I can do this on my own’,” Tammy Faux, an associate professor of social work at Wartburg College in Waverly, said.
In other instances, students attempt to change other’s perceptions.
“They want to start over again, they don’t want to be seen as being different anymore,” Paul Brooke, a Grand View University English professor, said. “In trying to forge that path, it may not go well. It may lead to struggle.”
Brooke said students he has taught at the Des Moines university handle situations differently. Some simply hand him an accommodation request form and walk away. “The student that comes to me and actually has a conversation with me, I always feel like that’s a better situation,” Brooke said.
Stigmas exist, although they might not be as strong as in other years, interviews with student counselors and professors revealed.
Faux teaches a May term course at Wartburg titled “Working with Different Disabilities.” Typically 15 to 20 students are enrolled in the class, which includes college students as well as partner students who are young adults with various significant disabilities.
One year, a partner student had a high level of autism that included extreme attention deficit disorder.
“I don’t think I’ll ever see ADD the same way again. She couldn’t sit still for more than 10 minutes and she was up and roaming,” Faux said. “That was a real challenge for the class to realize that she didn’t mean to be distracting. She got on sensory overload and needed to find an outlet for it.”
MENTAL ILLNESSES THE MOST PROMINENT
Mental illness is the most common invisible illness students deal with when trying to get a college education.
Stephanie Newsom, director of counseling services at Wartburg College, said 25 percent of that college’s student body seeks help from counseling services for various illnesses. “The top two reasons students utilize counseling is to help manage symptoms of depression and anxiety,” Newsom said.
At the University of Iowa, a survey conducted in spring 2014 for The National College Health Assessment showed depression and anxiety were the most commonly diagnosed or treated conditions in the mental health category.
Lisa James, the university’s associate director for clinical outreach at Student Health and Wellness, said student health professionals participate in summer orientation for incoming students, giving parents information and responding to parents’ questions.
Coe College in Cedar Rapids supplements on-campus student health services with medical help available in a partnership with St. Luke’s Family Counseling Center. Dean of Students Tom Hicks said the partnership includes counseling and therapy services.
“I think a lot of colleges struggle with: how do we work with students who need some longer term support? How do we identify that, how do we afford that, how do we have conversations with family if that’s the case, too?” Hicks said.
Michelle Laughlin, student disabilities service coordinator at Drake University in Des Moines, said a huge step for students needing accommodations is simply reporting their disabilities.
“I often talk to professors who will say they are concerned about a student and refer them to my office,” Laughlin said. “And then I see: perhaps they (students) need counseling, perhaps they need testing, or they just haven’t disclosed that information yet.”
Buena Vista’s Musel said colleges and universities can help students who have not yet requested accommodations with better education about available assistance.
Buena Vista, in Storm Lake, holds events on campus that help bring awareness to disabilities students deal with while in college, Musel said. “We do faculty development to help with that as well,” she said. “When students come in for their summer orientation I meet with their parents, so there are a lot of different ways we address that.”
Assistance has helped Cheyenne Goode, 22, an Indianola woman studying theater at Grand View University.
Goode, a senior at Grand View, has sought help while dealing with postural orthostatic tachycardia syndrome (POTS). During her four years, only one professor was unwilling to adjust to her needs, she said.
Over time, she said, she has needed student disabilities services available at Grand View less. She works with her academic adviser when scheduling non-traditional theater courses.
“Just because I’m sick does not mean that I’m incapable,” Goode said. “It just means that sometimes it’s a little harder.”
This IowaWatch story was published by The Des Moines Register, The Hawk Eye (Burlington, IA), The Courier (Waterloo-Cedar Falls, IA) and The Gazette (Cedar Rapids, IA) under IowaWatch’s mission of sharing stories with media partners. To learn how IowaWatch’s nonprofit journalism is funded and how you can support it, go to this link.