**Note: more detailed stories from this year's Spoonie Retreat will come as soon as I have the time, energy, and head space. But for now...
I feel so blessed to have found the Suffering the Silence community. It blows my mind sometimes to think how bizarre it is that I found them -- I happened to join a local EDS facebook group, somehow found the guts to respond to a post by a seemingly cool young person who wanted to get tea, and, after just that one meeting, trusted this person enough to go to the retreat they mentioned. I have no idea how it actually really happened, that me, a socially anxious introvert put myself out there in a group of strangers from around the country.
Regardless of my good fortune, it has been a game changer. The most important impact, for me, has been finding my voice.
The co-founders of Suffering the Silence were close friends from childhood, yet didn't realize until adulthood that they had both been sick for much of that time. They didn't feel empowered to share this huge information with one another, despite their close relationship. They were shocked at this realization and began to see how our society isolates and silences people, especially young and healthy-looking people, with chronic illnesses. So the mission of the aptly named Suffering the Silence, is to break us free from the choking restraints of shame. This has helped me to forge stronger relationships and more sustainable life practices. In this particular moment, however, I feel especially thrilled to have been given opportunities to share my stories publicly.
Thank you, #Sufferingthesilence for getting me on the stage to share my first story, for the small victories photoshoot, and for the endless conversations with my spoonie peers. And finally, here is my latest moth-style spoonie story, on finding my way back to myself!
(click here for a better viewing experience)