Going Back to School With Chronic DiseaseAuthor: Diplomat Pharmacy Date: August 12, 2019
Going back to school is stressful for everyone. Teachers finalize lesson plans, kids worry about fitting in, and parents have to get everyone out the door on time. For students coping with chronic disease, the challenges are even more daunting.
“My mom would pack my lunch for me — and she would also pack my medications for the day,” said Lissy Anger, who at the age of 7 was diagnosed with Crohn’s disease and Ulcerative Colitis (UC). “I almost always had a spare change of clothes in my backpack, because you just never knew when the symptoms of your disease — or even the side effects of your medication — could cause unexpected and unpleasant problems.”
For students with a chronic illness, going back to school can be a difficult transition. Specific eating, sleeping, and medication schedules can be difficult to adjust for school hours. Symptoms can become more problematic away from the comforts of home. Even keeping up with schoolwork can be challenging and stressful.
“I was always tired, and being back in school didn’t help,” Lissy said. “When your body’s going through so much, you don’t always get a restful night’s sleep. Your disease doesn’t take a break when the sun goes down. Being able to take a time-out during the day was crucial.”
Lissy had to spend a lot of her time at school in the nurse’s office. “My doctor used to tell me that if I wasn’t feeling well, I should lay down with my knees up in the nurse’s office,” she said. “They knew me well in that office, because I had to go there to get my medication before lunch every single day, regardless of how I felt. That adds up to a lot of time missed in class, and struggling to keep up was another challenge I had to face in school. It could be very stressful.”
Stress for Students With Chronic Disease
Stress and chronic conditions can be a vicious cycle. “The more anxious I felt, the worse I would feel. Stress was a trigger for my symptoms — and so many things were stressful. I always struggled to keep up in class because I was out so much for doctor appointments or because I was having a bad UC day. I missed recess often since it was right after lunch, and that’s when my symptoms were more likely to flare up. Unexplained absences that would cause me to be in the restroom or at the nurse’s office are difficult and embarrassing things to have to explain to other kids. Just the feeling of missing out or trying to maintain privacy about your disease was enough to cause major stress.”
Light at the End of the Tunnel
Today, Lissy looks back at the difficulties of struggling with a chronic disease from a different perspective. Learning to deal with her condition in a public environment gave her the confidence and strength to succeed in her adult life. While homeschooling might be a great option for many students with chronic conditions, Lissy was glad that she attended public school.
“I had a great support system,” she said. “Between my parents, teachers, and friends, I was lucky — and to be honest, it was great practice for the real world. Now that I am an adult, dealing with UC barely phases me. I ask for things I need and I’m not ashamed or embarrassed. I’ve learned how to plan my days and listen to my body.”
Having a support system can give anyone a leg up when it comes to dealing with challenges in the school environment. Many people can play a role in making the transition back to the classroom a smooth one.
What a Student With Chronic Disease Wishes You Knew
“Looking back, there are things I wished that people knew about being in school with a chronic disease like UC,” Lissy said. “I wanted people to know that they couldn’t catch what I had. I remember not being invited to parties because people didn’t understand. Kids see other kids that don’t eat the same kinds of food or the same portions and they don’t understand it. Sleepovers were hard — there would always be a big bowl of popcorn, and I couldn’t eat it. I spent so much time coming up with excuses.”
Lissy also mentioned that teachers can be an incredible asset for supporting a student with a chronic disease. From helping to educate the class about different diseases and conditions, to providing updates to the parents, the teacher has a direct line to that student for most of the day.
“Sometimes when I got home, I just didn’t want to talk about UC anymore,” Lissy said. “The teacher could have given my parents a much more accurate picture of what my symptoms looked like and even how my grades were. When you spend so much time dealing with your disease, it’s easy to fall behind. I think my teachers saw that first.”
Find Your Support System
Lissy still leans on a support system when she has questions or needs a sympathetic ear. When talking to her doctor isn’t enough, she follows support groups and other individuals on social media. There, she can talk about her symptoms and concerns and know that she is in a community of people who truly understand what she is going through. She also gets the opportunity to offer advice and support to those who are still trying to figure things out. “There isn’t a cure for my disease,” Lissy said. “It doesn’t just go away, but you learn how to handle it. There’s light at the end of the tunnel and you can still live a fulfilling life. It helps to see other people who have been down the same path, especially when they are living their best life.” Social media and online resources such as Diplomat’s Empower Ecosystem provide tools that can help manage chronic conditions and make the most of everyday life.
“When I was first diagnosed, my dad told me something I’ll never forget,” Lissy said. “He said everyone is struggling with something. The person next to you might have poor eyesight or high blood pressure. You don’t always see what someone is going through, but you’re never going through it alone.”
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