Living Better with Dysautonomia (Help #1: Support)

In this and future posts, I plan to share things that have helped me on my journey to living better with POTS (a form of dysautonomia). These tips may not be right for everyone, but they are options that have worked for me. I hope that these posts will be an encouragement to those of you struggling with chronic illness. As this series progresses, please feel free to comment on what has helped you too. I am always looking for ways to improve my overall health and quality of life!

(Update: I originally started blogging this series in a random order, but I have reconsidered and decided to post in order of what has helped me the most. For those of you observant readers, you will notice that I have changed my number one help to be support because I think that is a critical need for those of us with ANS dysfunction.)

Help #1: Support

I will never forget those early days of diagnosis. One powerful word comes to mind when I think of that time: isolation.

I was confused, very sick, unable to work, and I couldn't get straight answers about treatments or my prognosis. Tons of questions swirled in my head. Would I ever stand again without being dizzy? Would I ever drive? Could this be permanent? What medications work best? Am I on the right doses? Will I have to give up my career?

Additionally, I felt life slipping through my fingers, but none of my friends could truly empathize. Their lives went on as normal. They hadn't even heard of my condition before.

As a researcher, my first inclination was to do a Google search about POTS. I landed at dinet.org and found home. At DINET, not only could I find valuable information about my illness, but I found an active forum to support me through my emotional struggles, questions, and grief. The devastation of being disabled at age 23 was understood by peers who were enduring the same thing. Seasoned veterans, already adjusted to life with POTS, offered wisdom and hope to us newbies. Every step of the way, I had a reliable place to go for comfort and advice.

If you suffer from ANS dysfunction or think you might suffer from it, DINET is the place to find support. I have made some dear friends through this site. During a time of life when I felt no one could possibly relate to what I was going through, these friends could. Even now, as I endure multiple trials on top of illness, I'm continually encouraged by them, for they understand what it feels like to hurt deeply, to not be understood, and to struggle for years with no end in sight.

DINET is a place that provides hope, education, and compassion. These are invaluable treasures to a person suffering with dysautonomia.