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EDS Awareness Month – Awareness Meetings at the State House

Jon has connections at the state house, and he had set up kind of a meet-and-greet on May 24th. Several of us met with  a representative of the House Speaker, a House Representative, and Senator Jehlen’s Legislative Director. We talked about what Ehlers-Danlos Syndrome is, medical marijuana, the challenges chronic pain patients are facing in the current climate, bullying, and using a handicapped placard with an invisible disability (people getting yelled at by “concerned citizens” who think people with invisible illnesses are misusing their handicapped placards).

Lloyd C., Diana C., Craig C., Abby S., Me, Jon R.

As Jon Rodis wrote in his email recap of the visit – “Progress can only come from perseverance and addressing issues head on.  Partnering with our states representatives and legislators is mandatory to achieve the care and support we most desperately need.  In addition, we must make sure the media-in all its forms-is a partner as well.  The full and accurate message has to be conveyed.  Education, in all its forms, will indeed break apart the ignorance and misconceptions of what chronic pain is vs addiction, what disability truly is, what medical and legislative accountability is and should be to everyone with a chronic illness, and what is the state of healthcare vs the fiction of what those who don’t live with a chronic illness and all its effects on day to day life.”

This was another great experience for me, and I got to meet Jon’s co-leader of the EDS group, Diana. Unfortunately, I wasn’t feeling great, and I fainted towards the end of our stay, which was embarrassing. I collapsed, but I was okay, although I felt awful for the remainder of the stay. This particular collapse galvanized me to keep trying to get a wheelchair, which I’d been having a really hard time with. Again, despite the difficulties, it was worth it!

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