The Superhumans Amongst Us – Living with Ehlers-Danlos syndrome (EDS)

A friend recently sent me a link to a story and asked, “Have you read this? Do you know her?”  After reading the story, I quickly realized why my friend sent it to me — it is one of those stories that stops you in your tracks. There are also many similarities to my life, my story, and my job, that eerily overlap with the story of Jess Jacobs (link to Jess’ story is below).
In my opinion, those who seem to be “superhuman” in the eyes of others, are sometimes the ones who’s quiet suffering can be the scariest. Many times, those who appear to function the most, can “do more,” or don’t have “true” chronic fatigue syndrome/ME, POTS or ______ (insert any other complex medical condition), often know too much.
What does knowing “too much” mean? Knowing too much *may* mean recognizing and accepting that cutting-edge research on a particular medical condition is not widely known, accepted, or disseminated to the mainstream health care system. It also means understanding that medical research, device, and pharmaceutical development just is not there yet to provide the true help that most of us so desperately need — THAT is the hard reality of knowing “too much.”
For many of us, the only way to cope is by joining the effort to “be the change.” Because these “Superhumans” have long recognized that even the best specialists in the world who diagnose and care for those with complex, multisystemic conditions, have knowledge and resources that only go as far as current medical research and advances in the way medicine is practiced, are accepted and disseminated.

Picture originally posted on Chilmark Research’s website – click picture to read article associated with picture.

“Jacobs was famously outspoken and humorous about her health, her medical care, and the healthcare industry.
“I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding. I’m healthy enough to have a day job advising the people that chart the course of American health policy,” she said in 2013.
Jacobs was the force behind the parody Twitter account, @FarzadsBowtie, in honor of the trademark fashion statement of former national health IT coordinator Dr. Farzad Mostashari.
She also was famously upbeat to those who knew her.
“She’d be in the hospital and she’d be texting you,” said Carly Medosch, another chronically ill, activist patient, who became fast friends with Jacobs when they discovered they worked a block apart from each other in 2013. “You almost would forget that she was sick,” added Medosch, a speaker at MedCity News ENGAGE in 2015.
“She was always thinking of other people,” Medosch continued. Medosch said she received care packages from Jacobs even while Jacobs was suffering from poor care. “She was this superhuman.””

To read full article quoted above, please visit

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