by Jeannie di Bon, April 4th, 2023
It was lovely to receive this message and yet it saddened me too. These words are very loaded. It tells us what we’ve come to expect. It would never occur to me to abandon a client when they need support the most. I’m going to stick around for as long as I’m needed. I may not know all the answers, but I’ll find someone who does. Working with likeminded colleagues is a true blessing.
And yet those feelings persist due to the neglect so many of us have received with our condition. The disbelief, being told there’s nothing that can be done more to help, being told we are exaggerating our symptoms, being told it’s in our heads and to get some therapy. I hear stories like this every day.
I strive and hope this will change. By raising awareness and helping to spread the word that EDS patients need to be heard. I firmly believe there is always something that can be done to help. It may mean changing things up and getting creative. It’s time the narrative changes. Our collective voices will eventually be so loud, everyone will stand up and listen.
If you need to hear this today, you are most certainly not alone.