Health, News

Students with invisible illnesses cope with stigma in college

J.P. Aguirre avoids having an extra slice of pizza when he can. It is not just a choice or Aguirre trying to slim down though, it is a need for his health.

Aguirre, a senior majoring in broadcast journalism, was diagnosed with type one diabetes his freshman year of college. He is one of millions of Americans suffering from chronic “invisible” illnesses on a daily basis. People with these conditions often have their symptoms dismissed by others because they don’t “look sick.” These conditions pose special challenges for college students.

Aguirre switched doctors when he went to college, and the new doctor ran blood tests. His blood sugar came out to 312. The normal range is 70 to 100.

Aguirre had known something was wrong with his health a few years prior, but he put off dealing with it.

“You kind of don’t want to confront but there comes a point that you have to and then just figure it out,” he said.

Annie Louk, a senior majoring in english literature and criminology, started experiencing chronic pain and skin irritation all over her body in Spring 2016. She finally received a diagnosis of psoriatic arthritis over the summer of 2016. Before her doctors finally found a medication that helped relieve her symptoms, an injection she receives once a month, the pain even to stand was so bad that she had to use a wheel chair for two months during the summer.

“One of the hardest parts wasn’t even being in a wheel chair or all that,” Louk said. “It was coming to terms with it because you try to think, ‘Don’t let it define you’ or you try to move past it but really, it affects your life.”

Sofia Portillo, a sophomore majoring in nursing and health science, has lupus, a chronic auto-immune disorder that can attack organs and comes with a whole host of side effects including joint pain and sensitivity to sunlight. She was diagnosed in fifth grade, and one of the biggest issues she had to confront was how it changed others’ perception of her.

“One time this girl, it was in fifth grade, so she was giving out snacks, she was giving away her chips. I was the only one that didn’t actually want them, so I didn’t say anything, and yet she wanted to give them to me and some girl was like, ‘It’s just because she’s sick, isn’t it?’ and she was like ‘Yeah,’ but I didn’t want the chips,” Portillo said.

She felt that the other kids pitied her and didn’t understand what she was going through.

In college, Aguirre said that people can be pretty understanding when he takes the time to explain his diabetes, but people still aren’t aware of all of the consideration he has to put into everything he eats.

“I love pizza, but people go out and expect you to get a whole pie, but I can only afford one or two slices,” Aguirre said.

Because people who suffer from chronic, invisible illness can get mixed reactions from ignorant, insensitive comments – to pity, to dismissal and disbelief – a lot of them feel the need to hide their conditions and try to deal with them on their own.

Each of the students reiterated this desire to stay private about their illnesses.

“So I’m going through these things, but no one can really tell what I’m going through, and it’s not like I want to come up to people and explain, ‘Oh, I’m going through this,’” Louk said. “I don’t want to tell them my sob story and have them pity me. Everyone has something going on in their life that you don’t know about.”

After experiencing insensitivity from other kids when she was diagnosed, Portillo vowed to keep her struggles with lupus completely secret through high school, and got very upset when some teachers found out after a flare up. It was only in college, after seeing her cousin be open about her diagnosis of multiple sclerosis, that she decided she could share with her close friends and others if needed.

Aguirre said he’s a fairly private person and won’t talk about it unless someone notices his insulin pump and asks about it. If he doesn’t have time to explain it, he’ll just make a joke and say he wears a beeper. While Aguirre doesn’t think it has a big impact on the way other people perceive him, it has affected his life as a student as he’s had to be much more aware of his actions.

Aguirre attended Florida International University as a freshman when he was diagnosed, and was living in on-campus housing.

“I’m in a whole new environment in a dorm with three other guys I don’t know and I’m trying to hide the fact that I have a bunch of syringes,” Aguirre said.

He would take care of all of his insulin injections in private, behind closed doors, and then would go eat breakfast like everything was normal.

“I was kind of miserable in the sense that I would restrict myself from eating certain things just so I wouldn’t have to put in the insulin or wouldn’t have to deal with it. Like I wouldn’t eat bread or anything with sugar,” Aguirre said.

Outside residential life, Louk’s academics have been affected by her illness too. Her social and extracurricular lives shrunk and she had to miss class periods a lot during the worst of her symptoms because she was in so much pain.

“I don’t like skipping classes,” she said. “So then not being able to go, I felt like I was letting them down and myself down, and it’s something that I can’t help and that I can’t take back. It’s going on my transcript, I can’t just re-do it.”

The students spoke of not seeking many sources of support, dealing with their struggles independently for the most part. However, Portillo has a friend who also had a chronic, invisible illness and whose mom has lupus. She goes to that friend to vent because she’ll be concerned and understanding, but without “babying” her.

Portillo said she doesn’t need pity, just understanding.

“One time I was running outside and I was trying to tell the P.E. Coach that I was sick and that I couldn’t be in the sun and he just laughed at me and told me to keep running,” Portillo said. “So a lot of people dismiss, and that’s the biggest thing is just believe them, even if they are exaggerating a bit, that’s not for you to judge, that’s not for you to decide, and you never know, they might be going through something awful.”

November 13, 2017

Reporters

Annie Cappetta

Annie Cappetta can be reached on Twitter at @acmcappetta and via email at acmcappetta@gmail.com


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