How to Make a Dysautonomia Connection Count

When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly.

Chances are good that you’d never even heard of your disease before your diagnosis.

Family and friends all too often mean well and want to support you, but because they feel bad about what you’re going through and would love to take the pain away, they get frustrated when they realize that’s not possible… which is one of the last things you need.

And, in many cases, family and friends may become insensitive—or, worse yet, downright accusatory. “It’s all in your head!” or “You’ve always wanted too much attention!” are devastating comments to hear.

That’s why it’s vital to reach out and find a community of others sharing your diagnosis.

This is an area where the internet really shines. If you’re not able to meet someone else with dysautonomia face-to-face, Google “dysautonomia groups,” and you’ll get about 174,000 results. Here are a few you might want to check out:

Dysautonomia International—this site focuses on:

  1. Source: Dysautonomia InternationalAwareness
  2. Advocacy
  3. Advancement

 

It has a very comprehensive reach, with sections tailored to patients, researchers, physicians, family & friends, educators, and employers. It can help you find a group in your area.

Dysautonomia Support Network—this US-based non-profit organization seems like a great place to find your tribe! Some of their “specialty groups” include:

Source: Dysautonomia Support Network
Source: Dysautonomia Support Network
  • Dysautononia Divas: an online female support group
  • Dysautononia Dudes: offers online support for guys
  • Dysautononia Zebras: online support for a wide range of diseases, without a specific female or male focus

There are active chapters in almost every state, and most of them offer both online and offline connections via Facebook and various events and fundraisers.

 

Dysautonomia Youth Network of America (DYNA)—founded in 1999, DYNA was the first non-profit organization specifically dedicated to childhood/adolescent/young adult-onset dysautonomia. Among many things, it offers:

Source: Dysautonomia Youth Network
Source: Dysautonomia Youth Network
  • A membership-only youth program
  • One-to-one mentoring
  • Information about coping with dysautonomia in school settings, including special information for kids worrying about how to deal with their symptoms AND go to college

 


EmpatheticBadass

EmpatheticBadass

EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

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