The Many Paradoxes of Life with EDS

Karen Del Vecchio avatar

by Karen Del Vecchio |

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physical paradoxes

I can’t believe it’s the middle of August. Where did the summer go?

On Monday, I returned to work as a college counselor for high school students, yet graduation seems as if it were yesterday. I’ve been super busy this summer, but it’s been good. 

Last week, I had a great discussion with my new Pilates instructor, Kate. She’s still getting to know me, so I mentioned that I’m a mess of physical paradoxes. She asked what I meant, and it got me thinking about the ways my physical abilities and limitations don’t make sense.

For example:

  • I can unload 800 pounds of 50-pound grain bags, but exercising with a 2-pound weight makes my right arm and shoulder shake. Stirring stiff cookie dough is incredibly difficult, and grooming my horse makes my arm tired.
  • I can ride a horse at full speed and have it jump over obstacles with minimal trouble, but I struggle to stand and balance on one foot because my ankles are unstable. Kneeling is uncomfortable and often results in bruising.
  • I’m hyperflexible, but when I wake up in the morning, I’m so stiff I move like a robot, and my muscles tighten to compensate for my loose joints.

When I started thinking about it like this, I realized why my words often don’t make sense to others. I can do farm chores, but struggle with traditional workouts. I can do what appears to be difficult work but partially dislocate my shoulder doing range-of-motion exercises using no weights whatsoever (yes, that’s a true story). How is that possible?

Honestly, I gave up trying to figure it out a while ago. There are logical connections to what I can and can’t do. My shoulder causes me many problems, and unfortunately, it’s not an injury that can be healed. Holding weight close to my body allows me to use other areas instead, but when holding weight away from my body, I have to rely on my shoulder. My muscles tighten to compensate for the fact that my joints are too loose. 

If you don’t know about EDS, it doesn’t make sense. Even if you do know about EDS, it still is confusing. The lack of consistency used to frustrate me, as I struggle with things I don’t understand. I’ve had to accept that EDS isn’t linear. That’s not always easy, but it’s a lesson I’ve tried to bring into other areas of my life as well.

Not everything in life is easy to follow, but sometimes you have to make the best of things. 


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 Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


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