The Invisible Disease: Living with an Autoimmune Disorder at King's
Students at King’s who suffer from autoimmune diseases said each day can be challenging – often forced to deal with chronic pain – while having to balance battling the ailment with trying to do well in school.
Caris Ciccarello, a junior who has Crohn’s disease, said she was forced to slip out of class recently due to the intense colon pain common with the disorder. Her professor’s response: “Next time, sit closer to the door.”
“I was kind of surprised. Maybe he was having an off day,” Ciccarello said. “But there’s that kind of lack of understanding with invisible illnesses.”
Certain medications, however, can often give a “face” to the disease, she said. After suffering intensified symptoms and losing 20 pounds due to nutrient deficiency in the fall of 2018, Ciccarello was put on 40mg of prednisone, an intense steroid that relieves the body’s immune system, between midterms and finals.
“Some of the side effects were weight gain and moon face, which is great when you just transferred schools!” Ciccarello joked.
A recent study by the American Autoimmune Related Diseases Association found that one in five Americans suffer from autoimmune diseases – the majority of which will be diagnosed between the ages of 15 and 30. A broad term for over 100 chronic illnesses which result from the body attacking its own immune system, autoimmune affects several students at King’s.
After being diagnosed last summer, Ciccarello transferred to King’s to live with family in the area while finishing her degree. Since there is no cure for autoimmune diseases, Ciccarello said she focused on pursuing a healthy perspective and a normal college experience.
“Autoimmune makes you depart from your physical identity a little. I didn’t care about having to skip some classes, but when my face changed, I had to let go of what people think,” she said. “I wanted to tell everyone, ‘There’s more to me than prednisone face!’ But I don’t want this disease to come up in my everyday life.”
Dealing with chronic pain on a regular basis along with a full course load poses an ominous challenge for other students as well.
Caleb Hosner, a sophomore suffering from ankylosing spondylitis (a type of arthritis causing inflammation around the spine) said he’s just beginning to find ways to balance health and schoolwork.
“The fear with my disease is getting bamboo spine, where your vertebrae fuse together so you can’t move. Movement is huge,” Hosner said. “When I get out of bed in the morning the pain is worse, so I’ve just got to stretch it out. Sitting in class, I get up and stretch. I work out every day, otherwise I pay for it the day after.”
Hosner said he is registered for academic accommodation because of his autoimmune disorder.
“King’s is really good about making me comfortable,” he said. “My doctors gave the school proof of my disease. So, if I wake up and can’t function I just email my professors and we’re on the same page.”
Throughout his four years at King’s, Assistant Director of Student Success Christopher Josslyn has only received two registrations for disability accommodations on account of autoimmune disorders, though he was aware more students than that have had dealt with it at King’s.
“Any form of accommodations I strongly encourage,” he said. “Even if your autoimmune is minor and you think you can handle it, that’s not the purpose. The purpose is to level the playing field.”
Hosner was diagnosed in his senior year of high school. Now, he wants to use his story to encourage others.
“I thought I was unstoppable,” Hosner said. “Then God said, ‘Guess what? You’re not!’ So, I look at people differently now. When I encounter other people with autoimmune, I think, ‘Wow, you also know what it’s like to be in pain and have nobody understand.’ It’s taught me a ton and I wouldn’t have it any other way.”