Updated: Jan 15
School is stressful; school with a chronic illness is even more stressful. We all know that stress is the arch-nemesis of chronic disease. I thought I would share what has worked for me all these years.
Maddie and her brother Hunter in 2013
1. Talk to your DOCTOR
Especially if you are newly diagnosed, coming up with a plan to survive the school day is imperative. Discuss what medications you need to keep in the nurse's office. Consider having them write a letter to your teacher explaining your needs. Communication is KEY, even though it is scary.
2. Meet with Accommodations
Did you know you have legal rights to accommodations, depending on your diagnosis? Most schools have people whose entire job is to help ensure you are successful. Ask your school about 504 plans and other services. Growing up, some of my accommodations included receiving copies of notes, having tests read to me, extra time for testing, seating at the front of the classroom.
3. Write a Script
This is one of my favorite tips. Some of you may have invisible diagnoses. Others do not. I found practicing what I would tell teachers or classmates about my disease helped my anxiety. At the beginning of each semester, I would introduce myself to each teacher, discuss my tendency to miss school, explain my diagnosis and required accommodations. I also discussed how my narcolepsy presented and what to do if it became severe. Talking to classmates about my disease was also something I practiced. Ensuring people knew what to do when I had cataplexy, rashed, or fell asleep was really helpful and eliminated a lot of the anxiety I had about school.
4. Emergency Preparedness Bag
This is a bag that you can throw in a backpack, purse, or keep in the car full of everything you might need in an unfortunate circumstance. Mine includes Advil, Tums, Benadryl, Adderall (for my narcolepsy), nausea medication, Epi-Pen, bandaids, tampons, nail clippers, inhaler, and chapstick. This bag goes everywhere with me.
5. Be Proactive
This goes along with writing the script. At the beginning of the year, I explain my situation. I try to proactively communicate with my teachers. If I am missing class, I try to let them know beforehand. If I am missing school for appointments or surgery, I get assignments or take tests ahead of time (when possible). Often in my experience, proving you are a proactive student, teachers are kinder and more lenient with grades and assignments.
6. Stress Relief Routine
It's easy to become overwhelmed with life and the daily grind. Personally, I begin to feel flustered and non-compliant if I don't give myself frequent opportunities to decompress each day. Beginning in grade school, I realized I needed downtime after school before starting homework, or I would end up having a meltdown while trying to study. Every day after school, I would eat a snack and set a timer for 30 minutes to either watch tv or nap. This reset my brain before finishing my homework.
Another thing that really helps me is giving myself simple rewards for doing something I don't want to do. For example, if I finish this blog post, I get to spend 5 minutes watching Tiktoks. I suck at working alone or at home. I refused to do homework at home in high school and either did it at school or at a coffee shop. When I work alone, I tend to fall asleep. In college, I always did homework at my sorority or in the student center. Now, Kyle and I have our own offices but work together instead to be more motivated to get things done. Learning what works for you is VITAL!
7. The Buddy System
Making a friend in each class who knows your diagnosis and can help if you have issues is helpful. This friend often was a stranger that sat close to me, who I befriended. This person helped me in a variety of ways. If I missed class, they collected my assignments or let me borrow their notes. If I fell asleep, they would explain to the teacher or substitute what was going on. If I had a medical episode, they would take me to the nurse or call my mom. It was beneficial and is how I made some of my best friends.
Another helpful thing is planning your class schedule with your buddy. Especially in college, my buddy and I had the same major, so she was accommodating during labs when I had cataplexy. Classes that we didn't have in common, I found sorority sisters that needed the same class.
8. Calculating Effort
It's okay to say 'NO.' I think it is normal to not want to miss out because of your chronic disease. If you are familiar with the spoon theory, this will make a lot more sense. If you are not, please familiarize yourself HERE. Ultimately, you are the only person that pays the price when you overdo it. It sucks, don't get me wrong. I wish I didn't have a chronic illness and that I could keep up with what everyone is doing, but that's not the case. It's taken a lot of time and practice to be comfortable saying no to plans, especially when I really want to say yes. Only you can decide how comfortable you are with pushing your energy limits. It is a learning process, but the better you understand your body, the healthier you will be. Balance is key. For example, give yourself permission to get B's instead of A's so that you can have more energy to hang out with friends.
9. Be Your Own Advocate
The older you get, the more you have to advocate for yourself. I suggest practicing this transition beginning in grade school. When you are a kid, your parents advocate for you and talk to your teachers. Once you enter high school and college teachers, find this unacceptable. It is important to stand up for yourself, and it takes courage. The younger and more you begin advocating for yourself, the easier it is, I promise. Not only does this apply to school, but medically too. You are allowed an opinion on what treatment you receive and how doctors talk to you!
10. Stay Strong
This life isn't easy. Chronic illness sucks, but you are strong. When life or school becomes overwhelming, take a step back, give yourself a minute to fall apart, and make a plan for how to move forward. Surround yourself with people that understand. Join Co-Immunity support groups, get involved with something you are passionate about, live life to the best of your ability, and never give up.
Good Luck! I know you've got this.