How To Advocate For Yourself With Chronic Pain: School Edition
For the first 6 months of having New Daily Persistent Headache (NDPH), I did not know how to properly advocate for myself. I had the most difficulty in school as I went from having straight A’s and perfect attendance to missing school every week. My teachers did not know what was happening or how they could help because my illness is "invisible". Since I was in 7th grade when I first got my headache, I had a lot of help from my mom to coordinate with my teachers on having more time for assignments. After graduating from middle school, I realized that I would have to take initiative in high school and start to be more independent. It took me a while to really learn how to advocate for myself and know that it is ok to ask for extra time or to reschedule tests. What I learned over the past 3.5 years is that teachers like and admire when you take control of your education and set your boundaries. All of my teachers throughout middle and high school have been very understanding about my condition, and I make sure to tell them in the beginning of the school year about possible accommodations I need.
An accommodation plan that most kids and parents do not know about are 504 plans. A 504 plan is a school plan for kids with disabilities identified under the law, which includes chronic pain. This school plan allows for specific accommodations that fit each student's circumstances so they can have academic success and access to a safe learning environment. I was first informed about this 504 plan when I went to UCSF for week-long treatments. I had to miss multiple weeks of school and I was informed of what a 504 plan is and how it makes it easier to get my work in advance and have a lighter workload during my treatments. A 504 plan is re-evaluated every year and it is always possible to add extra accommodations, like taking breaks during class or having a separate area to take tests. The main point of this post is: don’t be afraid to advocate for yourself, especially to your teachers, because you are the only person who really knows how you feel. My advice to ensure academic success and feeling comfortable during the school year is to talk to your teacher and give some background history about your condition, and explain some possible accommodations you may need in the class daily or if you have an emergency situation.
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