Looking back at teenage life before my EDS diagnosis

It’s hard to believe that I head back to work soon as a college counselor and history teacher in high school. I enjoy my job, so while it’s great to have time off to recharge over the summer, it’s also fun to go back to school. It reminds me of when I was a student, and how much more sense my teenage life makes now that I know I have Ehlers-Danlos syndrome (EDS).

As I’ve mentioned in previous columns, I’ve always struggled with whether to cover my EDS bruising or simply wear what I want. Over the years, I’ve gone back and forth on the matter. The bruises I used to get from playing soccer prior to my diagnosis were often extreme, and there was no way to hide them other than with pants. As a teenager, managing that was hard because teenagers want to fit in and wear what they like, but I’d often be self-conscious about how my legs looked. Most of the time, I just gave in, wore what I wanted, and sported my bruises like battle scars.

Recommended Reading

July 14, 2023 News by Lindsey Shapiro, PhD

Altered sensory, pain perceptions observed in cEDS patients

I enjoyed school, as I love to learn, but I was never particularly confident in my friendships. My friends were kind and generous, but I didn’t live near any of them, which made getting together outside of school difficult. They often did things without me because they could all easily gather and I couldn’t. Looking back, I wonder how much of the stress I felt about those situations was normal teenage emotions and how much was due to anxiety.

Like so many others with EDS, I have anxiety, but wasn’t diagnosed until later in life. I understand now that I’ve had it my entire life but had learned to self-manage it to an extent. (Or at least I thought I had.) Sometimes, though, life can get overwhelming, which prompts anxiety to flare. (It was during one of those incidents that I was diagnosed.) I realize now that I wasn’t actually managing my anxiety when I was younger, but rather just plowing through it because I didn’t know any better.

Now that I have the proper tools to handle it, including tips and tricks I learned, as well as a low dose of medication, it’s incredible how much better things are. While it’s easy to look back and wonder how high school might have been different if I had known that I had EDS, being a teenager is tough even without a chronic condition. I hope that my experiences growing up with EDS makes me more understanding as an educator.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.