Chronic Illness at PSA

By Amelia Shultz

Phoenix Student Media

Chronic illness, something that tons of people deal with but few mention. You may have a chronic illness yourself or may know someone with it, but what every person deals with is a bit different; here is some insight into that experience. I interviewed some students and teachers with chronic illnesses at PSA, each bullet point and quote comes from one of the interviewees, the headings are questions I asked them.

Many students and teachers at PSA have a chronic illness

What these people deal with daily is hard. According to the Partnership to Fight Chronic Disease, “In 2015, 3.1 million people in South Carolina had at least 1 chronic disease; 1.3 million had 2 or more chronic diseases. Chronic disease could cost South Carolina $32.9 billion in medical costs and an extra $12.8 billion annually in lost employee productivity (average per year 2016-2030).”

Some of the challenges they face are: eating on the go, eating in general, socializing, sleeping, certain seasons, waking up, and stress.

One teacher said on accessibility at PSA, “The school is awfully tiny for people with physical disabilities… for students with physical disabilities the school is hard to maneuver in.” Multiple students with health conditions and religious beliefs said that it would be helpful to have dietary restriction-friendly lunch options. Another teacher stated, “And maybe also during health classes they could talk about chronic illness. We should celebrate disability awareness as a school.” In an interview, another student answered about accessibility by saying that having lights that dim would be helpful to people with migraines and sensitive lights.

The challenges to daily life are daunting. One interviewee said, “It’s very difficult wearing a mask for extended periods…” As previously stated, food and eating are problematic for chronically ill individuals, “I try to plan my meals and my day so that nothing flares up, I have to bring most meals, including my snacks. Some of the items on the menu are okay for me to eat but they are not always accessible because sometimes they don’t order enough lunch. But, I am appreciative that there is always fresh fruit served.” “Some foods are inaccessible for me to eat and I always have to carry around emergency pills with me just in case.” One student reported that the announcements are hard for them to hear and affects their knowledge of what goes on around them, and ultimately their grades.

As one may see, people with chronic illness experience changes in their everyday life because of their illness. “Chronic pain is unfortunately very often a permanent condition,” says Charlotte Hilton Andersen, a writer for creakyjoints.org, “Pain hurts, yes, but it can also cause cognitive issues, including an inability to focus, mental exhaustion, and brain fog.”

People can be ignorant and misunderstanding, what is one time you feel like they were?

-I feel that people assume that you feel good just because you look good. There is an overall perception that how you look is how you feel.

-I don’t show that I’m in pain a lot, I don’t mention it, so when I do people don’t feel like it's a big deal. When people don’t see me with a mask on they don't see that it’s a medical reason as well, that drives me crazy.

-The one time that I felt that they were ignorant or misunderstanding was that they took advantage of it. Because with Hearing Loss at first when you're like 6 or 7 years old your hearing is sensitive so when people are whispering it makes it difficult to understand them because you don't know what they're talking about.

-Some people immediately assume certain things about me after hearing about Crohn's without taking the time to listen to what I experience.

-One time when I had staph this girl looked at it and tried to touch it. Then I told her to stop because it gets inflamed and hurts if any pressure is applied. Also, one time it was Winter and I ran somewhere and I started coughing and wheezing and this guy told me to suck it up and stop faking it.

-No one asks about it, so it's not a thing that happens.

As one could see, chronically ill people face all this discrimination and ignorance, but why? Because they have health problems that they can’t control? “Disabilities and chronic illnesses can be significant barriers to daily functioning. For many disabled people, the biggest challenge of living with a disability is not the disability itself, but the way society responds to that disability,” states GoodTherapy, a website that provides access to therapy resources, “Living with a chronic illness or disability can be difficult. Many of the challenges are socially imposed—discrimination at work and school, stereotypes about sick or disabled people, dismissive attitudes toward disability rights, and access barriers. Though society is designed for typically abled people, people with disabilities and chronic illnesses are actually in the majority.”

People can also be caring and kind, what is one time you felt accepted and cared for?

-I would say that here at school, the few people that know of my condition are good at checking that I'm having a good week.

-Anytime that I have to go to the doctor, the admin is flexible for me to do so. And when other teachers check in on me and my students as well.

-The one time that I felt accepted and cared for is that the people that are my friends don't care and want to help me with everything

-When people ask how they can help or make me feel better.

-Once I was having an asthma attack, this girl offered me her inhaler. Once I was in class and this girl said I had dandruff on my head and I told her I got scalp Psoriasis because you can get it anywhere and she told me about a product (which I already use) but I felt very accepted.

-Teachers have always made accommodations. This one time I was in 5th grade and I had a migraine episode after playing hard at recess. We were doing one of those times table quizzes and I got a 30 on it. My teacher let me retake it once I was feeling better, I got a hundred.

And while people can be mean, they can also be the most caring creatures in the world.