Last night was our first support group meeting for POTS. We’d sent out a bunch of announcements to different online support groups and spread the word through some of his other POTS patients. We wanted the meeting to be open not just to patients, but to their caregivers. I was really excited because we’d had a lot of RSVP’s–but honestly–logically, I had to assume that many of those who RSVP’d wouldn’t make it because of symptoms or the inability to transport themselves there. I would have been excited if just a handful of people showed up.
We ended up having about twelve people from all over the POTS spectrum–some wheelchair/walker bound, some with MCAD, EDS, IH, Fibro. When I saw the room fill up I just wanted to cry. It was really the first time that I’d been in a room full of other people just like me–and you could see it in everyone’s faces just how much they wanted and needed the support and I think we were all grateful because we all knew how hard it was to keep plans and actually make it to something like this when you’re struggling with so many symptoms and challenges.
I knew immediately that we were a like-minded group because the first attendee showed up wearing the exact same outfit as me! We joked that we were going to make everyone else feel awkward for not wearing the standard POTS uniform.
Dr. Santa Maria had set up a whole slideshow to go over all the treatments and explanations of POTS–but unfortunately the tech crew left us with the wrong cords and we weren’t able to set it up. But that was okay–because we had tons to talk about anyways. I wouldn’t get into all the specifics online just to respect everyone’s privacy (what with being a support group and all!) But we did get to talk about medications and saline therapies and what doctor’s we’d seen (and shared phone numbers and recommendations) and we got to just talk for a few hours about how our lives had changed and what kind of impact the disease had on our families and relationships. This was a fully female group (except for Dr. Santa Maria) and most of the girls had brought their mothers or best friends so they were also able to share their stories.
We talked non-stop the entire time and even though I doubt many of us actually wanted to leave–about five of us came down with the same migraine because of the lights in the room, the uncomfortable chairs and the fact that we were all probably so hyped about actually attending.
I just have to say that there is a huge difference between the support you get online (which is also incredible) and the support you get in person. Giving everyone a hug at the end of the night and just interacting on a face-to-face level was so overwhelming. It was like being in a room full of best friends who knew you inside and out–despite never having met before in our lives.
I’m moved. I’m just completely overwhelmed with gratitude. I really think it was one of the best moments I’ve had since I was diagnosed.
Just the fact that there were other girls there who were my age who were going through the exact same part of their lives as I was just kind of blew my mind.
I really want to do more of this–we will 100% be having another POTS meet-up in the near future (probably early next month) and I’ve already discussed having another chronic illness group with Dr. Santa Maria to kind of expand the circle of support to some other diseases.
To the girls that showed up last night–it was out of this world AWESOME to meet you!!! To those who didn’t get to make it I hope you’ll get a chance to come next month!
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