Thank you Colleen and others for your support. It means a lot to me.

I am fresh off my "final" follow-up with my provider from the EDS Clinic--it literally wrapped up an hour ago, so I wanted to share that here for closure in case anyone else stumbles upon this post in their EDS journey.

I still feel sad and disappointed about how things unfolded. And it was honestly really hard as I prepared for the appointment to relive and reflect on the hurt that accumulated through the evaluation/consultation process. I started this journey almost three years ago when I thought I'd won a golden ticket getting on the waiting list, and then again when I scheduled my appointments. And a lot of what happened afterward was crushing.

Even if I didn't gain the information or treatment plan, or even in some cases, the consultations promised, I still gained valuable context and insights about my conditions. I was nervous because I was as honest as I could be in a pre-appointment letter to my provider, and one never knows how critical feedback will be received, plus it's intimidating to to share that feedback directly with a provider, especially when care for connective tissue disorders is in such short supply--did I really want to risk what little access I had?

But my provider acknowledged the "administrative problems" I experienced, and apologized for how it affected me, especially for someone they said puts so much thought and care into my appointments. (One kind of has to in this situation because in many ways folks with EDS/HSD are very much alone in navigating this.) And that mattered. They also commented I had "good care," and I don't know that I'd characterize it that way. I think the care they hoped to provide suffered and in some situations caused harm because they didn't "see" me and instead saw the profile of a "typical" EDS/HSD patient on an assembly line track through the consultative process. That was the last thing I expected. They didn't mean harm, but it doesn't erase what happened either.

Today, my provider attempted to answer my medical questions. This was limited given the limited information I gathered, but I appreciate that my questions and concerns were prioritized and valued. I know at least they're committed to doing better. Thank you all for your support during this challenging time.