LIfe with Ehlers- Danlos: Back to School with EDS

by Tiffany Early

Is it just me or are summers getting shorter? When I was a kid, summers seemed like a grand expanse of endless opportunity. Now, my husband (who is a college professor and gets a longer summer break than most) seems like he’s home (and making way too much early morning noise) for a few days and then gearing up to start the next school year. In light of this being the month that a lot of patients with Ehlers-Danlos Syndrome will be heading back into the classroom, here’s a guide for navigating a school year as smoothly as possible.

It’s only fair that I mention that I had no idea I had EDS during my time as a student. Looking back, I can clearly see EDS fingerprints all over my childhood, but I didn’t know it at the time. I taught for five years before my symptoms became too much to manage and still safely supervise 30 adolescents, so part of my experience comes from insight I gained as an educator as well.

Shop Smart. I wish I could change some of the damage I managed to do to my back and shoulders from my backpack in high school and college. I kept bruises and stretch marks across my shoulders for years from carrying a backpack that weighed way too much. Parents, talk to your student about not carrying too much in their backpack. Some schools will even loan a student an extra set of text books to keep at home, so the student doesn’t have to carry heavy books back and forth to school. Backpacks with wheels are not the worst thing in the world. If that’s your only option- rock it! Bling out that wheeled backpack and have fun with it!

Also, as you do your back to school shopping, invest in pencil grips to make writing easier. I’ve found some on Amazon especially for arthritic hands. While arthritis isn’t currently the problem with my hands, they still help reduce pain when writing. Check with your child’s school to see if a voice recorder (or the recorder option on a cell phone) can be used in place of note taking. If so, take advantage of that option. One of my earliest EDS related memories is looking around the classroom in third grade and wondering why no one else was crying because their hands hurt from writing.

Communicate. Even though I have had EDS my entire life, I didn’t have a diagnosis until a few years ago. I had also never heard of terms like “chronic illness.” I wrongly assumed that people who are sick get better. As a result, I didn’t really understand when I was teaching that several of my students were sick every day. I had students with chronic conditions. As their teacher, I was made aware of the condition and any necessary modifications. However, I believed that if the student missed school or “looked ill” those were the only days that student was affected by their illness. I wish someone had told me that the student faced a daily struggle. Granted, it wouldn’t have changed how I taught the student- I loved every child and strived to give them every opportunity to be successful in the classroom. However, I would have had a better understanding of what the child was dealing with; I would have understood that what may seem like a behavior situation was possibly the student’s frustration with their condition.

Set attainable goals. Regardless of the age of the person dealing with EDS, there are certain struggles that must be overcome. As a new school year starts, set goals to do your best. It’s okay if those goals don’t look similar to the goals of your peers. They’re yours. Maybe your goal will be to always sleep x number of hours each school night. Maybe your goal is to get out of bed when the alarm clock goes off. Perhaps your goal could be to have less class absences this year than last. You know the areas you (or your child) desire(s) growth. Make a goal that will help you toward that goal.

Even though I’m no longer teaching or a student, I still love back to school time. I’m encouraged by all new beginnings- and excuses to shop for new clothes and office supplies. Navigating the educational world is difficult- especially with a chronic illness in tow, but it is possible. I encourage you to do your best; don’t be too hard on yourself, and reach for the stars.