When Sari Kamp skips class, it’s not because she overslept. She wouldn’t stay in bed past 10 a.m. anyway — it triggers her chronic migraines.
Any irregularity in Kamp’s vitamin, exercise and sleep regimens can cause a migraine. They usually happen three or four times a month. Even more serious are Kamp’s abdominal migraines, which make her feel like someone took everything in her stomach, “put it in a blender, heated it up and put it back inside.”
But when the magazine journalism sophomore is walking through the S.I. Newhouse School of Public Communications, she doesn’t fit the textbook definition of sick. Her chronic migraines and abdominal migraines are only outwardly noticeable when she misses class, or when she goes at the tail end of a flare-up and ends up rubbing her head or looking woozy from her medication.
Otherwise, Kamp’s chronic illnesses are just invisible struggles adding to an already stressful college career.
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Kamp has dealt with chronic migraines since seventh or eighth grade and chronic abdominal migraines since 11th grade. When she’s going through the latter, Kamp can’t eat, or she’ll throw up. She’s fatigued, her stomach hurts and then — after anywhere from a few hours to a few days — the symptoms will abruptly disappear, she said.
Those conditions warrant registration with Syracuse University’s Office of Disability Services. That registration could ensure that Kamp is able to miss classes without being penalized. During first semester freshman year, Kamp was against that idea.
“I didn’t want to be the migraine girl again because that’s what I was in high school,” Kamp said. “Every teacher in high school knew about it, all of my friends knew about it, everyone in my grade knew about it.”
Right after high school, Sarah Piraino realized that her chronic illness — asthma — was jeopardizing her chances of joining the United States Navy.
“I had my asthma doctor write off that I didn’t have asthma, like I lied so that I could get in,” the junior history major said. “I was fully prepared to … never have asthma again.”
That’s common for students leaving high school, said Dorian Traube, an associate professor at the University of Southern California who focuses on adolescent health. They’re shifting from adolescence, where parents likely handled their health care, to adulthood, where parents often can’t talk to professors or health professionals to map out their child’s needs, she said.
In college, students get the responsibility of having those conversations, which can seem embarrassing and even lead to denial. Whether they have a chronic illness or struggle with mental health, Traube said students want to start fresh and tend to avoid requesting special accommodations.
“They want to prove to themselves that they can do that,” Traube said. “And that generally does not work out well.”
Kamp figured that out after missing a test freshman year she couldn’t make up. Her professor was understanding, but Kamp decided she needed to be prepared in case someone wasn’t.
That meant not hiding her chronic illnesses anymore.
“It’s part of my identity, and I think that I wanted to get rid of it coming into college,” Kamp said. “But I realized that I just needed to accept it, and it’s something I’ve learned to live with. I need to help myself in every way, and that was registering with ODS.”
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Starting her second semester freshman year, Kamp has had an attendance accommodation. ODS Counselor Judy Kopp said an attendance accommodation is the most common arrangement for someone with a chronic illness.
Students may also have a peer note-taking accommodation or something else to supplement notes, said ODS Director Paula Possenti-Perez.
Starting that fall, Kamp sat down with her professors at the beginning of every semester to explain her illnesses and figure out how she’d make up any classes she missed.
Her self-described confidence meant she didn’t have a problem making accommodations on her own. But ODS realized that not all students felt the same. When students had to initiate contact with professors, they were pushed into conversations with an unequal power dynamic, Possenti-Perez said. So ODS changed the system about a year ago.
“I had a few students, maybe two or three students, that I could see and hear their relief when I said ‘Well, I will be calling the professor, and I will be doing the first part, and then you’ll just have the follow-up,’” Kopp said. “And that made them a lot more comfortable because of that power differential.”
Now, ODS starts the conversation with a professor and outlines a contractual agreement for the student’s attendance. That contract is as much of a tool for professors as it is for students and encourages professors to think about the fundamental nature of the class. Is it a lecture or a discussion? Do students just need notes on what they’ve missed, or is class participation essential? Questions like those help professors determine how many absences can be excused before they change the class experience, Possenti-Perez said.
Once the door is opened and a contract is laid out, students step in to finalize how they’ll inform their instructor of an absence and make it up, Kopp said.
Out of every 10 people who are understanding when it comes to her illness, Kamp said there’s one who isn’t. So it’s nice to have ODS there as a backup, she said, to prove her migraines aren’t just another headache.
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Asthma is a more common chronic illness, and Piraino said that’s why most people don’t take hers seriously. It’s not cystic fibrosis or endometriosis. It’s asthma. It’s used just as a word: one she’s seen thrown around as a joke or an excuse to get out of a difficult swim practice, she said.
Piraino recalled pulling out her inhaler at work for the first time and her coworkers being shocked to find out she had asthma. People think she’s just out of shape when she struggles walking up a flight of stairs or trekking the half mile from her apartment to class in the cold, she said. And she believes some health care providers don’t listen when she insists her common cold will almost certainly turn into bronchitis.
At SU, it’s the Disability Cultural Center’s job to understand those struggles, said DCC Coordinator Kate Corbett Pollack. Pollack personally dealt with an autoimmune disorder and mononucleosis while getting her master’s degree at SU. While she went to ODS for accommodations, she went to DCC Director Diane Wiener just to talk. Pollack is now there for support as well.
“People with chronic health conditions often experience very similar things,” Pollack said. “So there is an identity around that, and it’s important that you can understand that this is part of my identity now and that’s OK. That can actually be a good thing.”
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That understanding is especially necessary for college students, said Beth Meyerowitz, a professor at USC Dornsife who focuses on the psychosocial struggles of those with chronic illness.
Meyerowitz’s research showed there can be psychological positives, too, related to chronic illnesses. The professor said that by having a chronic illness, young people can learn important things about life.
“The person can see life in a different way — maybe prioritize what’s important to them,” Meyerowitz said. “Perhaps formed closer relationships, learned who their real friends are, that they can count on some of their friends and so on.”
In high school, Kamp lost friends because she missed so much class. But in college, she found the social support Meyerowitz described. She had a normal first semester and sorority rush and found a group of about 20 girls she could count on for anything, she said.
Kamp’s best friend at SU knows when she has a migraine. She’ll bring Kamp apple juice to keep her blood sugar up and ask whether she wants to talk or just be left alone to take a nap.
Kamp knows she’s lucky. People don’t see any indication of a physical disability, and they may wonder why she’s rubbing her head in class when she looks visibly OK. They may assume she’s dosing everyday headaches with Tylenol, not prescription medication that knocks her out and makes her feel like a different person.
But those aren’t the people she bothers herself with.
“All the people I love and that care about me completely understand,” Kamp said. “That’s all that matters.”
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Published on May 1, 2018 at 12:30 am
Contact Kathryn: kjkrawcz@syr.edu | @kathrynkrawczyk
