Oops! I wrote this out and somehow never pushed published. Sorry for the delay in posting.
As I mentioned in the a recent post, I went to a VEDA (Vestibular Disorder Association) support group last week. I first found out about the support group the day after their September meeting and was disappointed to figure out that it would be another two months until the next meeting. At that point I was definitely intrigued by the thought of going to it, but a little part of me wondered if I “qualified” for support. But I put it on my calendar and was determined to try to go even if it was just to see what a support group was like. Then considering how neither my eyes nor my ears have been cooperating this past month I was starting to look forward to going to it. Ironically, the day of the support group was the worst day I’d had since July and I definitely needed encouragement.
I had never been to a support group before, so I was very curious to see what it was like. The group consisted of about 6 other women, a husband and a dad. We all took turns sharing a little about our story, then we went around again sharing news, progress, asking for advice, etc., and then we went around one more time to share something good that had happened. It all took about an hour and a half and was a great experience! There was a variety of stages, with some of the women being fairly stable and others being in the thick of having serious balance issues and just trying to get a diagnosis.
My favorite moment was when I shared what my issues where and I could say the terms Mal de Debarquement and Secondary Endolymphatic Hydrops and no one blinked. Instead of getting a blank stare or comments that they have no clue what I just said, the people nodded knowingly.
And it was fun to share a little bit about my favorite topic – Functional Neurology. 🙂
And, well, I am looking forward to our next meeting in January!