Rebecca and I have an awful lot in common; we both grew up weirdos in the same tiny mountain town in Northern New Jersey, attended the same high school at different times, have many of the same diagnoses, and even saw the same doctor at one point, long after we had both moved away from home. We had so much to talk about, I had to split our interview into two separate episodes.
In today’s episode, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job.
Next week I’ll be posting part two, where we talk about Rebecca’s advocacy work toward accessible transportation in Philadelphia, some of the social and economic issues facing the chronically ill and people with disabilities, reconceptualizing disability, internalized ableism, and diversity of disability.
They live with Ehlers-Danlos Syndrome (EDS), dysautonomia including POTS, Mast Cell Activation Syndrome, gastroparesis, and several other diagnoses.
More info on Ehlers-Danlos Syndrome: http://ednf.org/what-eds
More info on dysautonomia: http://www.dysautonomiainternational.org/page.php?ID=34
More info on Mast Cell Activation and it’s relationship to dysautonomia: http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
More info on gastroparesis: http://patients.gi.org/topics/gastroparesis/
See insicknesspod.com for more info.
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