Dysautonomia Starter Kit

Congratulations! You’ve just been diagnosed with dysautonomia, or have symptoms leading you to believe you have it.

I am so, so sorry.

Let’s be real. This sucks.

This is not a club you necessarily want to be a part of, but I promise you, the people in this club are great–and you’ll never have to do this alone.

You’re probably feeling overwhelmed and have no idea on how to get started, so I made a quick roadmap for you. Feel free to take steps out of order, even skip some, but I’ve prepared a general guide for you.

If you’re not new to dysautonomia but you’re looking for some helpful links and tips, check out my resources page.

Step 1 – Visit Dysautonomia International

Spoiler alert: Dysautonomia International is going to be your guide through all of this.

Dysautonomia International was launched in 2012 as one of the very first patient led advocacy groups connecting patients with physicians and researchers to help find a cure for all forms of dysautonomia. In the last decade, they have funded millions of dollars in research grants, hosted 10+ conferences (in person and virtual), hosted runs/walks, fundraisers, galas, created the largest online network of support groups for dysautonomia patients that exists, and is only getting started.

Lobby Day with Dysautonomia International in 2014

I was one of the first interns for this organization back in 2014 and it completely changed my life. The leaders are passionate, educated, and wholly invested because they or someone close to them has dysautonomia. My life has been a million times better by this organization and the people in it, and I have full faith it will help you on your journey, too.

Step 2 – Join Facebook Support Groups

Find the full listing of Dysautonomia International’s Facebook support groups here — Dysautonomia International has groups in several different countries as well as groups for all 50 U.S. states

Step 3 – Queue up some videos

The Dysautonomia International Video Library is my favorite resource to share with people. Over the last 10 years, they have been filming videos from conferences, events, and webinars. Nearly all of them can be viewed online for free, and the rest can be viewed online for a small fee.

My all time favorite video is our “What is POTS?” video–if you need a quick explainer for friends and family, share it with them! (And listen closely to try to figure out which part of the voiceover I did.)

Spend time in the video library watching lectures from past conferences and past webinars though–there’s a wealth of knowledge online completely for free and you can find tons of information on almost any topic.

In 2021, husband wife team Ashley and Cort Rippentrop released their film Behind the Visible about Ashley’s journey with POTS. They interview some of the top POTS researchers and physicians as well as some of my great friends I’ve met over the years. It’s an incredibly validating film for POTS patients and a phenomenal introduction to the syndrome for friends and family. You can rent or buy it on Vimeo here! (See if you can catch me in the movie for 2 seconds!)

Step 4 – Use the physician finder

To be blatantly honest: finding a doctor to treat dysautonomia is almost as hard as finding a cure itself.

I have two key pieces of advice:

  1. Use your localized Facebook support groups for recommendations (always search the group before asking for recs, I promise you there will be tons of info, and also maybe even tips/warnings about doctors to stay away from.)
  2. Use the Dysautonomia International Physician finder

If you are in a position to help host a physician education event (e.g., if you’re connected with a medical school or just know a doctor who’s eager to learn), please reach out to Dysautonomia International to help them in their mission to enable more doctors to effectively treat dysautonomia patients!

Step 5 – Connect with dysautonomia patients everywhere!

Check out hashtags like #dysautonomia, #pots, and #chronicillness on whatever social media platforms you use most and check out the content there!

Also be sure to get involved with the support communities mentioned above.

Step 6 – Acquaint yourself with The Spoon Theory

Years ago, author Christine Miserandino was at a dinner with friends and was looking for a way to explain having limited energy throughout the day. She grabbed up all of the spoons at the table, handed them to a friend, and would take one spoon for each daily activity, sometimes more depending on the difficulty of the task. Pretty soon, all of the spoons were gone.

After the shared this story online, it became the unofficial story of chronic illness patients. How many spoons will you have today? How many will you have to use on a certain task?

Several years ago, I got to make this graphic for Dysautonomia International that breaks this all down. Since then, it’s been shared across hundreds of websites, published in a scholarly journal, and apparently was even shared with several teams at my job and I didn’t even know it? I share this partially to brag (I’m really proud!) but also just to let you know, it’s really versatile!

Step 7 – Get helpful products

Your MUST haves as a new dysautonomia patient:

Check out my Dysautonomia Gift Guide I share every holiday season for ideas

Step 8 – Check out additional resources

I have assembled a general dysautonomia resources page that has a few of the same links as I have above, but a ton of extras–like great articles, links to blogs I follow, and more!

Check it out here!

Step 9 – Reach out with any questions!

I would be more than happy to answer any questions you have–this is a big thing you’re dealing with, and I’m happy to assist with as much as I can! I tell people all the time that if I don’t have the answer, I know a lot of people who do have answers.


You can also check out my general Resources page here!