EDS Is a Part of Me, but It Doesn’t Control Me

Karen Del Vecchio avatar

by Karen Del Vecchio |

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The past few weeks have been busy, yet so much fun. I was recently able to visit my grandparents, who live out of state, for the first time since the pandemic started. Now that they and the rest of my extended family are vaccinated, we were finally able to get together like we usually do each summer.

We were all excited to visit with one another and catch up, but there was another reason to celebrate: a family wedding.

My extended family is large, and just the immediate family members and closest friends of the bride and groom totaled almost 50 people. And that doesn’t include some family members, such as my brother and sister-in-law, who live abroad and were unable to attend.

If there’s one thing about my family, it’s that when we have a wedding, we all have a lot of fun — even when it’s held outdoors under a tent and the sky lets loose with pouring rain during a storm.

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The fact that I had bruises on my legs from Ehlers-Danlos syndrome didn’t matter, either. Nor did wearing flats because my unstable ankles don’t really allow me to wear heels without possibly ending up on crutches when I roll it for the umpteenth time. With people who know me and don’t ask invasive questions, I can just be me — not me with EDS. And that’s really important sometimes.

That weekend was such a great opportunity to enjoy myself a little bit. I’ve had so much on my plate lately that even though the pressure is starting to diminish a bit, I still haven’t figured out how to relax. That’s probably partially because relaxing is, shall we say, not one of my better qualities. I’m far more adept at stressing out than I am at relaxing, and the fact that so many people with EDS also have diagnosed anxiety doesn’t help, either.

Because I’m prioritizing self-care this summer, I’m trying to get better at it. I went on a day trip with my mom to a cute little town about an hour away to wander the local shops, have lunch, and get away for a day. It’s amazing what just a little change of scenery can do sometimes. It’s also important to remember that while my EDS is a part of me, it doesn’t control my life.


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 other 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.


John E Feerick avatar

John E Feerick

Life is going to win, but it does not have to defeat us. Karen is proving that.

Nancy avatar


I was diagnosed in 2002 after my 3rd neck surgery.

Nancy Grace avatar

Nancy Grace

Hello Karen , Just reading your post , remindind of me when I was younger , the flats , the ankles rolling and mom shopping time and family events ! You enjoy all of this !!!! And I always wanted to get back up on a horse ! Have not done this .,since the bilateral hip surgeries! I still some day even if it’s for a soft gallup ,dream ! Have not been stitched up for awhile , or been so graceful to fall in a while ! I’m on an upswing!
You enjoy ,every moment injured or not ! You go young lady !


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