4 Things I Wish I’d Been Told About Living With Ehlers-Danlos Syndrome

I have Ehlers-Danlos syndrome (EDS), and I’ll be the first to admit, I recognized that I might have the syndrome by seeing a graphic on… Pinterest. Yeah. I walked into my doctor’s office, hoisting high my iPhone, tapping the screen and saying, “I really do think I probably sound ‘crazy,’ but I really think I have this.”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A year and some change from that point, and I was diagnosed by the Mayo Clinic in Jacksonville, Florida.

For those of you who also share the syndrome, you know how little most doctors actually know about it. Today, I’m sharing with you just a few things that no one really warns you about Ehlers-Danlos syndrome. Bear in mind, I have type three, or Ehlers-Danlos syndrome, hypermobility variant (hEDS), so not all of these may apply to your particular type of EDS.

1. How utterly exhausted I’d be most or all of the time.

I knew it was “normal” to be an adult and be tired, but I had no idea just how fatiguing constant pain, soreness and stiffness would be. It makes sense, but if you’re like me, some days after doing even some activity most would consider to be mostly relaxing or only slightly strenuous, I can barely get out of bed. I’m pretty tired.

2. How I would prioritize my life differently.

I look at life now as something to be thoroughly enjoyed to its maximum while I still can. While EDS is not technically considered degenerative, I do know that at some point I may lose my mobility and “freedom” to maybe participate in activities in a way I would like to.

3. Your fear of losing others because of your disability.

This is a little emotional to explain, but feeling as though you’re a burden to yourself, your family, and your loved ones is far more common for me than I expected. 

4. How much I would learn about myself in the process of being diagnosed and living with Ehlers-Danlos syndrome.

I don’t think I could ever realize how much I would learn and realize about myself throughout the process of being diagnosed, as well as what I learn every day while living with Ehlers-Danlos syndrome. I have learned that I am capable even on my worst pain days, that I am strong, that I am worth caring for, and that regardless of how I may see myself at the moment, there are others in my life who think I am valuable and special to them. I didn’t always believe those things about myself.

If you have EDS, what are some things about the syndrome that you wish you had been told?