This morning, I was on an elliptical before work, reflecting on the life-long journey I’ve been on with exercise and Ehlers-Danlos syndrome.

I hated PE class as a kid. I was so bad at every activity; gym class felt like ultimate humiliation. During the mile test, I felt my lungs burning against my chest and my vision fading, and still, lagged so far behind my classmates. In first grade, I tested into the bottom 1% for gross and fine motor skills. I couldn’t catch or throw– in fact, I broke my pinky and failed the Football Skills assessment in middle school, the first failing grade I had ever received. When I was in high school, I walked the mile and chatted with my friends, because I didn’t want to show how slow I truly was, even when I tried. I did, however, totally kill it during flexibility tests.

I assumed all of this was my fault, and I was too ashamed to tell an adult how I was feeling physically.

It’s hard for kids and teenagers to admit they struggle with gym, especially in a culture that admires athletes so deeply. Naturally athletic students are rewarded through scholarships, through recognition, through social benefits, while kids who are chronically ill– whether they’re diagnosed or not– are embarrassed by what their body lacks. Of course, all people have propensities to certain things– people who are naturally skilled at math or learning to languages or music are also rewarded for their talents. However, the goal of physical education is not to create fast runners for the sake of fast runners, but to teach students healthy lifestyle practices they can take with them into adulthood.

I wasn’t diagnosed with Ehlers-Danlos syndrome (EDS), a rare disorder affecting connective tissue, until college. I hadn’t assumed I was sick– EDS is mostly an invisible illness with a high co-morbidity with POTS. You can read more about EDS here and POTS here. Although there are people who have a whole a range of symptoms that I can’t speak to, in my personal case, it was easy to wave any symptoms off as “quirks.” To read a list of my symptoms, click here.

EDS makes exercise hard, but at the same time, exercise is one of the best ways to reduce symptom expression. To learn more about general guidelines for EDS exercise, click here.

Now, I try to exercise almost every day, but I missed years and years of healthy habits because nobody around me understood how to encourage a kid with EDS to exercise in a way that was helpful, challenging, safe, and free of embarrassment.

I know my experience is not unique– there are many kids with EDS and other health conditions going through the same thing. I realize I’m not an educator, but I think that it’s important that PE teachers listen to the voices of patients, look out for kids who are struggling, and take their experiences into account.

Here’s what I wish my PE teacher knew about EDS students in gym class:

1. Be mindful of tests that glorify flexibility

   I was terrible at PE, but I was awesome at the V-sit. However, I wasn’t stretching the muscles that I was supposed to– I was stretching my already loose connective tissue. This wasn’t great for me longterm. PE teachers– is there some kid that seems super flexible for no reason? They might or might not have a connective tissue disorder. Make sure you encourage flexibility stretches that teach them to stretch the right place. Teach correct form and tell them where they’re supposed to feel it– otherwise they risk dislocations and subluxations.

2. Give kids an opportunity to exercise privately and independently

   In school, I was so embarrassed about how I compared to other students, that I didn’t want to exercise at all. When we finally entered the weight room in 7th grade, it was a relief– I was finally able to participate, and it wasn’t obvious whether or not I was in shape compared to other kids, the way it had been when I was the first to give up on sit up tests. Team sports might be great for some kids, but if someone isn’t naturally as able to help their team, they can feel that they’re letting their friends down.

3. Sometimes “lazy kids” are actually sick kids

   Some students will come to you with a doctor’s note and a diagnosis. Other students won’t be diagnosed for years and years, especially if there disease is rare– but their health problems are still real, and they will still struggle in your class.

   As I’ve learned more about my health, I’ve become so grateful that I didn’t push my body to do things that it wasn’t capable of and that didn’t feel right. However, although I know that listening to my body was the right thing for me, it was never seen as a valid choice in PE class.

4. Strive for health and growth, not competition
   

   This is the most important bullet. This is what PE class is about after all– encouraging a healthy lifestyle. Many students are graded on how fast they run, how many push ups they can perform, how many balls they can catch.
   Understand that kids don’t all come from the same starting point– if a student, like me, has a naturally high heart rate, they shouldn’t be running as fast as the school guidelines might require.

   Instead of encouraging kids to reach a certain goal or impress their friends, encourage them to find an exercise that makes them feel healthier and stronger than they were before.

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   Have your own take on living with a rare disease? Let us know here!

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