I got sick the summer between my freshman and sophomore years at the University of Oregon. This wasn’t a one-and-done sickness. It was the slow-burning kind — it stayed with me so long it became normal.
A ruptured ovarian cyst put me in the ER. The doctor suspected appendicitis after I came back the next day with increased pain. Nurses rolled me into a CAT scan machine after injecting iodinated-contrast (a medical dye) into my veins.
As the doctors ushered me out of the CAT scan room, I felt hot. Hives developed all over my body and my face started to swell. I didn’t have appendicitis, but I did have a severe allergy to the contrast.
I was taking summer classes at the time of my initial allergic reaction and barely remember what I learned the rest of that summer. I was pumped full of the steroid prednisone and given an inhaler — the smoke from the Columbia Gorge fires irritated my immune system even more, giving me a respiratory infection on top of my newfound allergy.
As my sophomore year started, I experienced stomach issues on top of random allergic reactions every few months. I struggled with my short-term memory, forgetting simple words. Writing out vocabulary words for any class felt like wading through thick water. I slept all the time. My grades dropped and my social life strained.
One allergist insisted I was just anxious and perfectly healthy otherwise.
But I didn’t feel like I was a physically healthy college student.
I have a chronic illness, and with advice from other students and young people with chronic illnesses, I’m learning how to deal with being young and sick.
After months of searching for answers, an allergist in Portland suggested I have mast cell activation syndrome. I’m allergic to the contrast dye and, as it turns out, just about everything else.
My mast cells — the cells involved in allergic reactions — overreact to normal stimuli, causing a multitude of chronic health symptoms. The latte I’m drinking while writing this could trigger a reaction one day — but the next it won’t.
I had an answer and a treatment plan just in time for my junior year. But an important part of being sick is coping with it, and I’m not so great at that — especially with the added stress of college.
So, as any writer does, I decided to research and ask others about their coping methods.
According to a 2014 Pediatrics article about university health centers’ capacity to care for students with chronic illnesses, 20 percent of American youth have some type of chronic health condition. George Washington University sophomore and nonprofit founder Shira Strongin is one of those students.
When she was around 10 years old, she started having neurovascular issues leading to clotting and other neurological symptoms like seizures. Around the same time, she began an anonymous blog called Sick Chicks that chronicled her story.
Strongin, a California native, says it was important for her to capture the whole story of her life and her illness.
“I talked about things in a very realistic, straightforward manner,” she says. “It wasn’t all about health. I’d talk about going to the hospital and then going to a school dance in the same sentence. That’s just how it works when you’re chronically ill.”
A couple years ago, she began developing Sick Chicks into a nonprofit to showcase the stories of young women dealing with chronic health issues and disabilities. The nonprofit consists of Sick Chicks Crew, a campus arm of the organization, and a blog featuring young women’s chronic illness stories.
“I think so many patient orgs are dedicated to coping. Coping is great and it’s really important, but there’s also a huge amount of complacency within coping,” Strongin says. “And I wanted this community to be something where, if you wanted to cope, that’s your choice and that’s OK. But we can also turn that coping into empowerment.”
Applying for college was an ordeal for Strongin. She was in the hospital the night before the Common Application was due, and her health also affected her ability to take the ACT and SAT. She had to look for testing-optional schools, and the need for follow-up care restricted her to regions that had ample medical care for her condition.
But even Strongin’s preparations didn’t secure stability at school. She ended up withdrawing during her second semester because she was frequently in the hospital. She’s back at school this year.
Strongin is registered with her school’s accessibility center, which helps her advocate for herself when she has to miss class because of appointments, hospital visits and bad health days.
When we spoke, she was in the middle of finals. We chatted about how this time of year is especially hard for chronically ill students. Even setting up our interview reflected this — we had to reschedule multiple times due to a trip to the ER for me and lack of sleep for Strongin, which makes her more vulnerable to seizures.
Strongin emphasized the importance of communication when it comes to interactions with professors, friends and others about her illness. While she says she’s more comfortable being open about her health, other people need to find that sweet spot of sharing for themselves. For Strongin, that’s being as open as she feels she needs to be for the situation. Another person may not want to talk about their illness, and that’s their imperative, she says.
Socially, her friends sometimes designate her as the “party mom” because she doesn’t drink or do drugs — other than the multitude of meds she’s on, she joked. She is close with the professors in her specific department at school and feels more comfortable advocating for her needs with them than her other professors.
Lilliah Baker, a high school acquaintance of mine who has ulcerative colitis, a form of inflammatory bowel disease, says the heavy workload in her degree program at school taught her an important lesson about hard work.
She studied animation at Laguna College of Art and Design in Laguna Beach, California, before her IBD worsened and she decided to take a break from school. Baker said her degree program was intense and she studied for long hours to impress her professors. Her advice for students with chronic illnesses in similarly difficult programs is to know the difference between working hard and working smart.
“This whole past year for me was a lesson in managing [my] pride and not being stubborn,” Baker said. “You have this disease, and there’s such a thing as working hard and working smart. The second one is what’s going to get you further.”
Strongin’s and Baker’s experiences reminded me of my own — the delicate balance of what info to share, registering with UO’s Accessible Education Center and the countless prescriptions I take.
If I’ve learned anything from them, it’s that coping looks different to everyone. In sickness and in health, I’ll find my way — even if it takes time.