I went to a lecture on Postural Orthostatic Tachycardia Syndrome (POTS) this weekend so that I could learn more about my condition, but I got more out of it than that. It was a long drive and we were late after getting stuck in traffic. My husband pushed me (in a wheelchair) into a room full of seats with a mix of people on them. The empty seats each had a sample of NormaLyte, a popular salt rehydration mix amongst Potsies. We scooted into the back and I got situated. I was feeling very weak and shaky after the long drive. I opened my cane/chair combo in front of my wheelchair and used it to prop up my compression stockings covered legs and proceeded to chug down some gatorade. All of this seemed okay. I was out in a group of people and could just be myself.
I was very interested in the lecture. I had heard about it through a Facebook group and the speaker was a well educated specialist from the Mayo Clinic. I was paying close attention, but kept looking around at the people in the crowd. These people either experience the same condition I do, or they know someone who does.
It was difficult for me to stay seated throughout the lecture. I began shaking and getting more symptomatic. I always cut and run home when it gets that bad. My husband was ready to pull us out, but I insisted on staying. We had a good opportunity to leave once the lecture was over and the Q&A section was going, but again, I wanted to stay. I wanted to hear about what these people wondered about, what their concerns were. Plus, the organizers had done everything possible to make the event comfortable, including providing plenty of fluids and salty snacks- they really went all out. The whole event was very well done and truly catered to the needs of those with POTS.
Afterwards, the person in front of us introduced herself. She was the first person I had met in person with POTS or Dysautonomia (that I know of, anyway). We chatted for a bit and I learned about her and her family history. She was energetic and reflected on a time when she had also been in a wheelchair, like me. Next, I asked my husband to push me over to another person and she, too, was in a wheelchair- a beautiful one at that! I complimented her on it and we began chatting. Though she seemed quite a bit younger than me, I felt like she and I had so much in common. We went to the same specialist at Harvard and had similar experiences. We both also experienced involuntary movements, so I was eager to know about her experiences related to that.
While I know that everyone with POTS is different and that we experience the condition in our own way, I was compelled to find similarities. On the drive home, my husband pointed out many of the ways the manifestation of my POTS differed from these individuals, as he was taking a more clinical approach. After all, I do have Hyperadrenergic POTS, while they had the more traditional POTS. As much as having clinical answers has been important to me, I was looking for something more.
I think I was seeking community, just like I do in online groups and blogs. I think that is also why I am training to volunteer with Dysautonomia Support Network. That group not only focuses on online community, but also seeks to get local gatherings organized. I understand the reasoning for that a lot better now. It can be very hard for those of us with Dysautonomia to get out of the house, but connecting in person means that you are not alone in this experience.
One of my biggest transitions has been the loss of mobility, so it’s no wonder I would try to connect with the only other person in a wheelchair there. I don’t actually expect to be real life friends with those I meet, but just meeting them makes me feel less isolated. I knew from the statistics that POTS is relatively common, but being there with other Potsies made me feel understood. They knew why I was in a wheelchair, why I was wearing compression stockings, why I was chugging gatorade, why I was elevating my feet, and so on. I needed to provide no explanations and received no cockeyed looks. It was freeing.
Now that I understand the value of meeting others with Dysautonomia and POTS, I am more excited about getting involved with this community. Hopefully I can go to more events like this in the future and maybe even organize some. I’m sure that plenty of other people with these conditions could benefit from connecting, too.