Navigating high school is challenging enough; however, chronic illness can make it nearly impossible. My first diagnosis, of Crohn’s Disease, came at 15 years old. It was the fall of my
sophomore year of high school and my biggest concern, at the time, was making varsity soccer. My entire world was flipped upside down.
I tried to balance AP courses, varsity soccer, a social life & chronic illness, all at once. I sought out straight A’s. I tried to get as much playing time as possible on the field. I ran my ass off, took hard hits and never backed down from a tackle. I bounced around to different friends groups and was pretty likeable to most people. I was constantly on the go, having so much fun (while secretly feeling like shit).
When I was finally diagnosed, my Gastroenterologist (GI) said he had never seen such an aggressive case of Crohn’s; he couldn’t comprehend how I was getting out of bed in the morning. He was shocked at my ability to function through my symptoms. I was slowly dying, yet had never even heard the term “chronic illness”.
I immediately started taking many medications that came with a multitude of side effects. The medicine I most struggled with was Prednisone. If you don’t already know, Prednisone is an evil steroid. It causes so many side effects, including moon face, weight gain & mood swings. Having chipmunk cheeks, or “moon face”, made me very self-conscious. I hated seeing pictures of myself… I didn’t recognize my new body, no matter how hard I tried to accept it. I took on unhealthy coping mechanisms, like over-exercising and under-eating. The pressure to be pretty or perfect was suffocating. I cared more about my looks, my ego and my reputation, so I tried to hide my illness the best I could.
Upon my diagnosis, we set up a 504 plan at school, for medical accommodations. These accommodations included unlimited absences, occasional extensions on assignments and breaks from class if needed. Luckily, my teachers were all mostly understanding, helpful and accommodating of my situation.
Soon after my diagnosis, in November, I was rushed to the ER with an obstruction in my gut; my intestines were literally swollen shut and covered in hundreds of ulcers. I was admitted and transferred to a children’s hospital in Boise, ID for a bowel resection surgery. I missed several weeks of school, fell so behind and became depressed. My anxiety was through the roof because I could NOT keep up in my AP courses. I felt like I was drowning in schoolwork constantly. It hung over me like a dark cloud; it engulfed my thoughts. I even had a massive breakdown to one of my teachers. We had a writing assignment in AP U.S. History that completely baffled me. I took my teacher out into the hallway and sobbed to her. It was such a low point for me. I had always prided myself on my academics, so my self-esteem wasn’t great.
I finally finished the year, with a ton of ups and downs. This is typically how it went for me. I would have good times, bad times and everything in between. My health was a rollercoaster ride through hell. I managed to do well in school, despite my drawbacks, but it was a struggle. I continued playing varsity soccer each year, taking AP courses, going to school dances, hanging out with friends—the usual. I wanted the “normal” high school experience so badly.
The summer before my senior year rolled around, and I decided to fast-forward my education by taking summer classes. This way, I could graduate early and work on getting my health under control before heading off to college. Thank goodness I was done with school because, come second semester, I had a massive Crohn’s flare that resulted in another bowel resection surgery. Later that year (2016), I officially graduated amongst my peers. I missed out on a lot. I missed our class photo, for example. I had to learn how to overcome FOMO (fear of missing out) because chronic illness makes you miss out on a lot. Sometimes I would be the odd friend out because I was too ill to participate; and I had to learn how to be okay with that. Regardless, I still had so many amazing memories to hold onto. I am so grateful for the positive moments that made life with chronic illness worth living.
I put a question box on my Instagram story for you guys to leave your questions about chronic illness and high school. I’m going to answer them below!
Q: How did you deal with absences?
A: This is a tricky question; it’ll be different for everyone. However, there were a few things that definitely helped me. I had medical accommodations set up with the school in my 504 plan. Also, I was in constant communication with my teachers. If I were going to be absent, I would email them as soon as possible, to let them know. Communication is key.
Q: How would you respond when someone tells you the elevator is only for sick + injured people?
A: If it’s another student, I would simply say, “I know” and carry on. I would also carry a doctor’s note with me, in case a teacher/administrator questioned me. Explain your situation, and hopefully they will adhere to what you need. If they don’t, talk to someone about it because it’s NOT okay.
Q: What chronic illness supplies should I keep in my backpack?
A: My accommodations allowed me to eat in class, when needed, so I would always carry little snacks with me (Goldfish, Ritz crackers, granola bars, fruit, dry cereal, etc.). Any medication I took in the day had to go through the school’s front office. They kept my Tylenol, pain meds, etc. I also always carried hand sanitizer, moisturizer, chapstick and water bottle. Now, I keep similar items in my purse! I also have my epi bag that holds my epipens, eye drops, inhaler and meds.
Q: How to stay social when you’re struggling?
A: Definitely the online chronic illness community on Instagram! Connecting with people who understand you and your situation is crucial. There was no community to turn to when I was in high school. I literally thought I was the only teenager going through this shit. I was so alone, in a lot of ways. This space would have changed my world as a teenager, so I encourage everyone to find your people (because I promise you they’re out there).
Q: How do you go about starting a 504 plan?
A: First, you need a diagnosis that falls within the ADA guidelines. Then, your doctor needs to write a letter to the school administrators explaining why you might need accommodations. Lastly, you meet with your teachers, administrators, guidance counselors, etc. to discuss and finalize your accommodations. Like I mentioned earlier, some of my accommodations included unlimited absences and snacks in class.
Q: How do you deal with teachers not following accommodations?
A: Take it to administration. Tell a parent. Advocate for yourself!! Teachers have to follow accommodations, by law. By not following accommodations, teachers discriminate against disabled students. This is not okay! I totally understand how tough it can be to stand up for yourself, but you absolutely have to. You deserve an equitable education!
Q: How do you cope with having to take easier classes than you normally would?
A: Okay, I absolutely love this question because I wish I had this advice when I was in high school: TAKE THE EASIER CLASS. You don’t need to take every AP or Honors course to get into a good college (if that’s the route you want to take). Be easy on yourself and grant yourself some mercy; Chronic illness is so difficult and traumatic, at times; don’t make it worse for yourself. I pushed myself way too hard and sacrificed my health in order to take the harder courses; it made me feel miserable, anxious and overwhelmed. Just don’t do it to yourself. Please. I would give this advice to my teenage self, in a heartbeat, if I could.
Q: How do you complete schoolwork when you are fatigued?
A: Little by little. Take lots of breaks. Stretch and step outside for a breath of fresh air. Drink water and eat snacks. Ask for help. Spread it out over the weekend. Work from bed. Naps! Be easy on yourself.
Thank you so much for sending in your questions, I really enjoyed answering them! Feel free to leave a comment or send me a message if you have further questions. Please know you’re not alone in this; there are SO many people going through the same thing.