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Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

My First Support Group Meeting

My First Support Group Meeting

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I won't being writing about the personal stories that are shared in the group (because what is shared in the group, stays in the group) but I will be outlining my experience and the resources I plan to develop. The drastic change in the weather (went from being 60 degrees the day before and sunny to about 40 degrees and raining) and my lack of sleep made getting to the meeting difficult for me. I was running on about 2.5 hours of sleep and my joints were aching. But my excitement to meet other people with my condition, outweighed anything holding me back.

According to the RSVP list, a total of 6 members were going to attend. I arrived about 15 minutes beforehand to find the place and get things set up. When the hospital had said they gave me their largest conference room, I was expecting one large table (like a boardroom style space). I was surprised to find clusters of workgroup tables and the fire code sign on the door said the room capacity was over 200 people. The room was dark so I searched all over for a light switch...the only one I found was right next to a fire alarm. Terrified of setting off the alarm, I decided to push this strange looking button anyway...and...all the lights in the room slowly began to turn on :) Yay, No alarms! It's now about 2 minutes before the meeting is supposed to begin.

I individually messaged all of the "Yes" RSVPs, to let them know how to find the room.

*It's now a few minutes after our scheduled meeting time and I'm the only person in this large room*  I remind myself that it's the first meeting, people will need time to find the place, and it's raining.

Two people show up within 10 minutes of our official start time and we decided to wait a little while to start because it was our first meeting.

It turned out to be the 3 of us for the meeting and I couldn't be happier with the depth of our discussion. I laid some basic ground rules, provided my background & reasons for starting the group, and the discussion happened organically. I have future topics to explore and resources to create. So many things to research! I'm excited and so incredibly thankful that the other members showed up.

For me, it's not a numbers game (how many people can I fit in the space), it's about helping other patients. The depth of discussion brought up important topics that I had either forgotten I needed to address or things I needed to look into further. The emotional support of being in a room with other people who GET IT, when I'm talking about my condition - is priceless.

Afterwards I felt fulfilled. I have direction. I have support. I felt validation for what I'm trying to do, there are others that need this group too. And I'm looking forward to our next meeting. From the bottom of my heart, thank you to the members that attended our meeting.

Support Group Week

Support Group Week

Watching Patch Adams

Watching Patch Adams