Iowa State University graduate student Katie Anthony knows cyclic vomiting syndrome is no party.
The syndrome, commonly known as CVS, sends a sufferer into a cycle of vomiting a minimum of seven times every hour for the next 12 hours of his or her life.
For four or more days at a time, Anthony puts the journey to a master’s degree in journalism on hold, missing classes, work time and contact from the outside world as she vomits multiple times each hour – the highest level has been 16 times an hour. After 48 hours, Anthony is in an emergency room, battling dehydration, pain, and once, so much pressure on her brain she was at risk for stroke.
“That’s just the life of anyone with CVS,” Anthony, 25, from Cedar Rapids, said. “It’s not an easy syndrome to have.”
For some students, being sick is a major hurdle to clear while getting a college degree. For still others, it’s everyday life.
This leaves colleges and universities with challenges, dealing with student disabilities rarely encountered but which drastically impacts the amount of engagement students can put into courses.
ILLNESSES ARE NOT THE SAME
The impact is felt with relatively unknown syndromes like CVS, which Anthony manages for several days at a time. Approaching graduate school at Iowa State for faculty accommodations took some strength on her part, Anthony said, because she knew her disease sounded – and looked – unbelievable.
“They know I’m sick, but whether or not they believe me is another statement altogether,” Anthony said. “It’s a hard disease to believe until you’ve seen me 48 hours into it, lying on a hospital bed.”
The challenge is familiar to Grand View University senior Cheyenne Goode, 22. A theater major, Goode’s postural orthostatic tachycardia syndrome (POTS) and the accompanying depression, chronic daily headaches and fibromyalgia has disrupted her daily routine for the past six years, changing the way she approached finding colleges while in high school.
“I just needed to be near home, and my pharmacy and doctors that already knew what was going on,” Goode, from Indianola, said. “When you don’t understand something, it is hard to believe.”
Goode began approaching Grand View and her professors for classroom accommodations after encouragement from her specialist at Mayo Clinic. With time, she depended less on student disability services oversight and now works closely with her academic advisor for the non-traditional theater courses she takes. During her four years, Goode said, only one professor was unwilling to adjust to her needs.
University of Dubuque sophomore Amanda Harrop also lives with POTS but with some key differences from what Goode faces. A Clinton native, Harrop said she doesn’t remember much of her senior year of high school; for some of it, she wasn’t even awake. For nearly two years from senior year 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 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.”
At its worst, Harrop estimates she attended only a day and a half of high school each week of classes.
“My life was pretty much waiting to lose consciousness,” she said.
Harrop had been free of those episodes for 10 weeks in mid April 2015 but was living and working with the cloud of chronic exhaustion. To combat it, Harrop worked with her college advisor to schedule all of her classes during the morning.
“You’re supposed to take three lab classes, but I really only take two in a semester,” Harrop said. “I can do mindless homework and feel pretty crappy, but you can’t really go to lecture feeling crappy.
“We tailor my schedule to how I need to meet my needs.”
DEALING WITH AUTISM
Autism is gaining public awareness but more understanding of those students and their needs is necessary, Buena Vista University junior Jacob Amhof said.
“Autism is really nothing to be ashamed of. Sometimes, it can be a great gift,” said Amhof, 21.
That doesn’t mean dealing with it is easy. Amhof was diagnosed at 9 years old after struggling to communicate through most of his childhood, avoiding eye contact and staying silent in front of others. Through doctor visits and therapy Amhof has made progress, but still works to pick up on visual cues that others notice naturally.
“That’s why I ask a lot of questions as to what people are feeling, what they’re thinking,” he said.
Things like the speed of class lectures can hinder Amhof’s ability to absorb the content, and not every professor understands. Amhof asked one professor to write key points during lectures on the whiteboard so he had time to take notes, but said the professor declined to do so.
“I really couldn’t keep up with them when I was taking notes on my laptop,” Amhof said. “He just wanted me to try to get it in my head the best I could but, really, I need stuff like that written down.”
Through accommodations with Buena Vista’s student services, Amhof said he is allowed extended times for tests and can take breaks from class when he feels overwhelmed. He also is cleared to have a fellow classmate take notes although, aside from his experience with one professor, he hasn’t needed to rely on note takers.
Iowa Central Community College and now Buena Vista, have helped Amhof, from Fort Dodge, adjust to living on his own. Seeking a double major in vocal performance and music production, the formerly uncommunicative student said he is passionate about making a career in the entertainment industry, such as in voice acting.
Autism, Amhof said, might be a disability but it doesn’t have to hold anyone back.
“I actually think there’s a lot of good traits,” he said.
UNIQUE SCHOOL CHALLENGES
Living with an invisible illness often means more work to maintain grade-point averages and class assignments. Students with illnesses still need to deal with attendance policies and sometimes limited days.
Iowa State’s Anthony can explain what limited good days are like. Although her syndrome is thought by specialists at Mayo Clinic to have started when she was 17, Anthony already had graduated from Simpson College with a bachelor’s degree in multimedia journalism by the time she was diagnosed at the Rochester, Minnesota, medical center in August 2014.
Soon after, she withdrew from Iowa State under medical leave but returned at the start of the spring 2015 semester as a part-time student and teaching assistant. To date, she estimates she’s missed almost half the term.
“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 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.”
Belmond native Aimee Loats, a sophomore at Simpson College, doesn’t have any outward sign of being sick, but living with Crohn’s disease has impacted her life drastically since she was 10 years old.
One bad day of Crohn’s easily can turn into a few 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.”
Missing material adds up. By November 2014, Loats was so sick she was unsure she could make it through the end of the fall semester.
“I was so, so tired some days I could hardly get out of bed. I was in so much pain,” she said. “I was pushing myself, wondering, ‘can I make it through the last month?’ Or, ‘if I push myself will I push myself back into the hospital?’”
After talking it over with Simpson officials and friends, Loats decided to take a medical leave. She returned in January 2015 as a full-time student but had to consider seriously whether or not her field of study would be too much to handle in the future.
“My advisor sat me down one day and said, ‘Let’s be realistic. Do you think you can actually handle this with your illness and graduate on time?’” Loats recalled. “This is something I have to live with my whole life, so it’s better to face the problems than say, I can do what I want. In reality, not everyone can do what they want.”
Loats chose to continuing working through the challenges, she said, because she cared strongly about getting a biology degree. “I would have been very disappointed in myself if I opted out,” she added. “I just don’t have any other passions like I do for medicine.”
BEYOND THE CLASSROOM
Some student disability services work with students to identify and manage housing accommodations – flexible arrangements that can range from physical requirements, like a building with an elevator, to dining plans and what their food plan looks like.
Most students living with illness or disability have to ask for academic accommodations, with which school faculty members are expected to work with students and a list of accommodations provided by disability services. That list ranges from in-class note takers to extended testing times.
One request went wrong from the start for Abby Gardyasz, a freshman majoring in art and Spanish at the University of Northern Iowa.
Gardyasz, 19, of Ankeny, lives with juvenile arthritis that was diagnosed when she was 18 months old. Characterized by inflammation of joints, stiffness and chronic pain, Gardyasz tires quickly during the day as she balances classes, work study and volunteering through the local Catholic student center in Cedar Falls.
The relatively small size of UNI’s campus means she can walk distances between classes. But an unexpected staircase to her requested first floor residence hall room provided a challenge on move-in day in fall 2014.
“I wanted something that didn’t involve using stairs, and I got a room where I had to climb up a flight of stairs, and there’s no elevator in the building,” Gardyasz said. “They call it a first floor, but you go up a flight of stairs.”
That one oversight affects much of her daily life, from returning home after a bad day, leaving for meals, and having enough stamina to do laundry when those facilities are on a separate floor.
“At the very least, it’s frustrating,” Gardyasz said.
Housing accommodations are a typical request.
Harrop worked with the University of Dubuque to find a living space that worked with her strict symptom management lifestyle, from her scheduled meals and snacks, which keep her blood sugar at a normal level, to her 9:30 p.m. bedtime – a sleep schedule that directly conflicted with many of her fellow residents in the freshmen dormitory.
Three months into her first year, Harrop moved to housing for upper-classmen to cut down on noise at night, in turn cutting down exhaustion. Although she rooms with four other students, her single room enables her to better control her days.
“I don’t deviate from that schedule, because if I do I have very severe consequences,” Harrop said.
TRAVELING FOR TREATMENT
Some students in Iowa take on the daily effort to function when sick where treatment is not always closely available.
Originally interested in attending the University of Minnesota, Loats, who receives infusion treatments 30 minutes from Simpson at a clinic in Clive, had to make a decision about college.
“I had to decide, okay, do I want to drive five hours and go get my meds every six weeks, or do I just want to stay closer, and I can have a little more access to that, especially if I ever got sick?” Loats said. “You can’t just be in the middle of nowhere, with no access to medication.”
Insurance is a concern, too.
By the time Anthony begins her fall semester, she’ll be adjusting to a new insurance plan for Iowa State’s graduate students after transferring from her father’s insurance.
The transitions will be stressful: Anthony, an Ankeny resident, will move all her health care from Methodist West Hospital in West Des Moines, where doctors know her and her illness, to new doctors at the ISU student health center in Ames. That could produce up to a 40-minute drive when she is in Ankeny for every emergency room visit at Mary Greeley Hospital – a problem compounded by her typical vomiting cycle, which generally makes her sick between 6 p.m. to 6 a.m.
“It’s going to work out better when I’m sick in class and have to go to that emergency room, but other then that it’s going to be very stressful, especially when I’m sick at night,” Anthony said.
LIVING WITH LONELINESS, STIGMA
Beyond the logistics of living with hidden illnesses – the classwork, the daily management – a sense of loneliness exists. So does a sense of personal stigma.
“Arthritis is something they think of as an old person’s disease anyway,” Gardyasz said. “It can make you feel like that, too.”
Being able to say no to extra work or activities is a major part of pain management for Gardyasz. Although she is able to push herself on some days to try something like the campus rock-climbing wall, more often then not Gardyasz finds herself on the sidelines of those physical activities.
“I wish I could do that kind of thing more often and not have to recover for so long after,” Gardyasz said. “Some people, they’ve done all these things during the day and during the evening, and then finally they do all of the studying they were going to do the next day. They’re up all hours of the day and night.”
“Not having the energy or stamina that some people seem to have can be difficult,” she added.
That sense of isolation strongly impacted Amhof during his start at Buena Vista when, he said, he contemplated suicide after initially struggling to connect on campus and adjust to his new classes.
Amhof’s initial protectiveness of his new friends – he says he couldn’t stand it if anything happened to his friends because of him – took them aback, he said. He also said he worried that he was being ignored when someone seemingly overlooked him on campus.
“I just felt like everyone really didn’t like me, so what was the point of living?” Amhof said.
It took a conversation with a student residence advisor for Amhof to recognize his importance in campus life, and he said he feels passionate about his involvement in groups and organizations. He’s found friends in students on and off the autism spectrum on campus.
“These are some of the best friends I’ve had in years,” he said. “Open up, listen to these people, do the very best you can to help them adjust because who knows? You may have a lot in common with these people.”
THE UNEXPECTED TWIST
Katie Anthony is sick of the drugs her body is grown dependent on to keep her vomiting at bay. The stream of doctors exhausts her. On some days she argues with family members over the treatment she seeks.
But one thing is non-negotiable: Anthony said she will earn her master’s degree, and someday she hopes to teach undergraduates who are fighting their own medical battle.
“The reality of it is I would be dead now if I weren’t doing it – striving to be better, and to do better, and to positively affect change in my life and the lives of others, which keeps me going,” Anthony said.
“The future undergrads I’m going to work with – I can look in their eyes and say I know you’re sick, because I’ve been there. You don’t have to be in my class necessarily. I’m going to work with you to learn, because I believe you.”
That passion propelled Anthony into the next major step of her fight. In March, she was accepted for the wait list for the Powell Chemical Dependency Center, an inpatient dependency program at the Iowa Lutheran Hospital in Des Moines, where she hopes to restart her body and cut down on the drugs on which she relies.
“That’s what my body is right now, it’s dependent on all of these drugs. Unfortunately, a lot of them are affecting my brain chemicals, and I can’t safely come off of them without being under constant medical care,” Anthony said.
She expects to spend 60 to 90 days in the program in summer 2015 before returning to school next fall.
“I’m going to be mingling with people with kidney and liver failure. And that’s what my life is facing if I continue on these drugs that I’m taking one to four to six times a day,” Anthony said.
“I feel like I’ve failed because I’ve had to admit how much help I need. But I’m still fighting.”