Not every one of these resources applies directly to coping with dysautonomia, but every resource here has been beneficial to me or to a friend or family member.
Information about dysautonomia
Blogs
- Dysautonomia International’s blog
- How To Get On
- Lethargic Smiles
- Living with Bob
- POTSgrrl
- The Sick Chicks
- With a Side of Salt
Social media accounts
- chronicallycandidmemes
- disabilitytogether
- gmf.designs
- Imani_Barbarin
- more.than.midodrine
- pinksaltcollective
- tinu
Facebook support groups
- POTS (all ages)
- Teens with Dysautonomia
- College Support Group
- LGBTQ+ Support Group
- Black Support Group
- Men’s Support Group
- POTSibilities Parents (great for parents of children with all forms of dysautonomia)
- Location based support groups
Doctor finders and databases
Some of my favorite posts and articles
- The article I wish I’d had: Diagnosed with POTS and still anchoring the news (by Summer Dashe)
- Disabled people are not an inconvenience (via Harper’s Bazaar)
- Harder than MIT: Living with postural orthostatic tachycardia syndrome (via The Tech/Sarah Mendelowitz)
- How to be comfortable & safe in the hospital (via POTSgrrl/Lauren Stiles)
- How to find the right therapist (via The New York Times)
- How to appeal a health insurance denial (via The Wall Street Journal Guides)
- How to talk to your practitioners about your physical pain (via Illness to Wellness)
- Long-COVID-19 Patients Are Getting Diagnosed With Little-Known Illnesses Like POTS (via Time)
- On wasting my time – The numbers (via Jess Jacobs)
- Please pass the salt (via Dysautonomia International Blog)
- The Spoon Theory (via But You Don’t Look Sick)
- This is what it’s like to try and get diagnosed with an invisible illness (via BuzzFeed)
- Twitter Disability and Chronic Illness hashtags (by @Tinu)
- You Feel Like Sh*t: An Interactive Self-Care Guide
- Why “You don’t let your disability stop you” is nonsense
- 8 things to remember when you feel broken inside (via Power of Positivity) – my therapist sent this to me in a time of need and #7 really resonated with me
Apps and tools
- Flowly – VR biofeedback at home using your own phone
- Heartmath – biofeedback at home
- Supercook – recipe search by what ingredients you have at home
- VacayAbility – imagine Yelp where every review is written by your chronically ill and disabled friends. An invaluable resource created by Natasha Graves.
- WeatherX – app and ear plugs to help with barometric pressure changes. I only use the app to track pressure changes and it is fantastic.
Books
- Disability Visibility by Alice Wong
- Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
- Principles of Autonomic Medicine by Dr. David Goldstein
Movies and videos
- Dysautonomia International Video Library
- Behind the Visible – feature length film on POTS
- What Is POTS? – short informational video, perfect to send to friends and family who need a quick introduction
Shops that support dysautonomia research and great products for dysautonomia
- smile.amazon.com (select Dysautonomia International!)
- Fighter Wear – super popular at conferences
- Hydrate Club subscription box – lets you try out different hydration supplements every month, run by an amazing volunteer for Dysautonomia International
- Liquid IV – hydration supplement, Dysautonomia International Sponsor; check out discount codes on Dysautonomia International, also look for deals on Amazon & CostCo
- NormaLyte – hydration supplement, Dysautonomia International Sponsor
- Spoonie Sister Shop – great apparel, accessories
- Vitassium – hydration supplement, Dysautonomia International Sponsor