Ehlers-Danlos Syndrome: One Woman’s Rant is Unsurpassed

I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas such as the skin and joints.

First of all, Karina, thank you so much for having the courage and strength to talk about your experiences and frustrations in dealing with EDS, as well as doctors. I don’t know what it’s like to live with EDS, but I can sooo relate to dealing with doctors who lack in bed-side manner. It’s pretty crappy.

And before I go further, I want to state, for the record, that I’ve been to Germany many times, having had family there, and always enjoyed my experiences. But living with a chronic illness in Northern Europe has got to be challenging from a cultural perspective, because people tend to be very private, and they’re probably more likely to take the words of their doctors without question.

Then again, I realize how baffling it must be to Germans how much Americans tend to overshare and challenge their doctors in an effort to become their own health advocates.

The Simpsons season 10 episode 18 10x18
That concept is foreign to many Europeans. Source:

Thankfully, Karina seems to have developed a healthy dose of chutzpah and she, like millions of other Americans and Canadians who’re living with chronic illnesses, are STANDING UP for themselves and SPEAKING OUT!

I think this is a crucial aspect of self-empowerment.

But what I’m most curious about is whether or not she rose to the occasion when her doctor basically said:

“If you’d just stop obsessing about your EDS, you could live a good life.”

My response?! Sure, dude, you sit there with your successful practice. You’re probably happily married with two kids, a dog and a cat, and live in a “McMansion” on the river in a gated community. You have a personal shopper, maybe a chef? You’ve got a gardener, you vacation in Vail and Venice, and you also happen to like your patients—as best as you can. Maybe?

downton abbey maggie smith snob middle class defeatist

Am I bitter? Nooooooo. Seriously, I admire anyone who’s smart enough to get through medical school and specify in neurology! WE NEED MORE NEUROLOGISTS AND SPECIALISTS! I really admire you!

But where is your compassion?! Not everyone is as fortunate as you.

People struggle to pay bills, and they have to deal with insurance companies and the ramifications of being rejected for diagnostic tests and treatments. People have to deal with their boyfriends, girlfriends, lovers, spouses, and life-partners leaving them because they are not suited for living with someone who has a rare disease like EDS—especially when so many people go undiagnosed.

Every day, people are suffering physically and emotionally with EDS; they need compassion and respect from their doctors.

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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