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.
Are you newly diagnosed to dysautonomia? Check out my Starter Kit which breaks down some resources step by step!
Information about dysautonomia
- Dysautonomia International
- Cleveland Clinic
- Johns Hopkins Medicine
- Vanderbilt Autonomic Dysfunction Center
Blogs & Websites
- Dysautonomia International’s blog
- Emily Rich, OT
- How To Get On
- Invisible Illness Awareness Network – highly recommend them! they put on great in person and virtual events
- Illness to Wellness
- Kate the (almost) Great
- Lethargic Smiles
- Living with Bob
- Pink Salt Collective
- POTSgrrl
- Sarah McGlory – Adaptive Living
- The Sick Chicks
- The Unbreakable Hope
- With a Side of Salt
Social media accounts
- chronicallycandidmemes
- chronicallyme.marissa
- thechronicallyhonest
- disabilitytogether
- emilyrichot
- gmf.designs
- Imani_Barbarin
- Invisible Illness Network
- Invisibly Aware Series
- jillcantstaystill
- more.than.midodrine
- nicolepedra
- pinksaltcollective
- tinu
- unapologetically.humann
Facebook support groups
- POTS (all ages)
- Teens with Dysautonomia
- College Support Group
- Black Support Group
- LGBTQ+ Support Group
- Men’s Support Group
- Spouse and Significant Other Support Group
- POTSibilities Parents (great for parents of children with all forms of dysautonomia)
- Location based support groups (there are groups across the world and groups for all 50 U.S. states)
Doctor finders and databases
Organizations that support common comorbidities
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 via WPDE)
- Chronic pain is a pain in the you know what and getting help is complicated (by Alisa Michele via The Ability Toolbox)
- A condition called POTS rose after covid, but patients can’t find care (via The Washington Post)
- 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)
- Illness Happens: Diagnosed Care Package (via Kate Bowler) – this is one of my all time favorite resources, Kate Bowler is a genius
- 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)
- Salty meal ideas (via Dysautonomia International)
- 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 (via jace_harr)
- Why “You don’t let your disability stop you” is nonsense (via Tinu Abayomi-Paul)
- I am not always very attached to being alive (via The Outline) – this is a very powerful piece about living with suicidal ideation, please read with caution if you are currently experiencing those thoughts, but it’s an important read to caregivers and people supporting loved ones with these thoughts
- 5 ways to support employees with chronic illness (via builtin)
- 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
- 15 ways POTS turns the grocery store into an obstacle course (via Yahoo!)
Apps and tools
- Flowly – VR biofeedback at home using your own phone
- Folio – this app lets you store bank cards and scan all kinds of important cards and documents, so when you forget your wallet or are missing something, all you have to do is open your app. I use this to store my insurance cards, COVID vaccine cards, and other health documents so I always have them with me
- Heartmath – biofeedback at home
- Migraine Buddy – log migraines and track barometric pressure changes
- Monash University Low FODMAP App – costs $13, but is such a good resource if you’re on a low FODMAP diet–makes everything easy to understand and search
- 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.
- Health Document Template – this is a template I created that you can fill in and bring to doctors’ appointments with all of your information for easy reference and access
Books
- Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann
- Chronically Loved by Natasha Graves (a beautiful children’s book about chronic illness)
- 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
- Everything Happens for a Reason (And Other Lies I’ve Loved), No Cure For Being Human (And Other Truths I Need to Hear), and seriously any book, any document, anything written by Kate Bowler
- How to Keep House While Drowning
- My Body is Not a Prayer Request by Amy Kenny
- Principles of Autonomic Medicine by Dr. David Goldstein (free online download)
- Together We Stand: Riding the Waves of Dysautonomia by Jodi Epstein Rhum
- novels by Talia Hibbert – she has POTS and writes fantastic books with characters who have chronic illness
Movies and videos
- Dysautonomia International Video Library
- Behind the Visible – feature length film on POTS by amazing husband wife filmmaking team Ashley and Cort Rippentrop
- What Does Dysautonomia Feel Like? – patients at a Dysautonomia International conference describe life with the condition
- What Is POTS? – short informational video, perfect to send to friends and family who need a quick introduction
- Why Don’t We Care About Disabled People? by The Try Guys – fantastic video by Zach Kornfeld that explores what it’s like to be disabled
- Crip Camp – Oscar nominated documentary on the early disability rights movement, focused on a 1970s camp in New York for teens with disabilities
Podcasts
Shops that support dysautonomia research and great products for dysautonomia
- smile.amazon.com (select Dysautonomia International!)
- Fighter Wear – super popular at conferences
- Spoonie Sister Shop – great apparel, accessories
Hydration and electrolyte supplements
There are so many hydration and electrolyte supplements on the market, but I’ve included some notes on the most popular plus my favorites and my friends’ favorites (all in alphabetical order)
- Buoy – this one is drops instead of a powder–I’ve heard that it’s really salty but people recommend adding it into a flavored drink instead of just adding into water and it helps with the flavor–so something like tea, juice, etc.
- DripDrop – easy to find at drug stores
- LMNT – has the most unique flavors I’ve ever seen–people love this one because it has electrolytes and is 0 sugar without being disgusting. They recently launched sparkling waters with the electrolytes in them which looks awesome–I love the options.
- LiquidIV – you can find good deals on Amazon, CostCo, and they frequently do sponsorships of influencers and YouTube channels and will offer discount codes–my favorite flavor is the new Firecracker Popsicle flavor, it’s so good
- NormaLyte – to be 100% honest it’s not my favorite, but it has an unflavored powder that I would recommend mixing into a flavored drink like juice or tea because it thickens the liquid it’s in, so it’s a bit odd in water but I think would go well with something else!
- nuun – very popular with athletes–what I like about these is that they’re tabs that come in a container similar to the classic Mini M&M tubes from the late 90s, so they’re very easy to carry around.
- Pedialyte – it’s a classic for a reason! Always drink it cold though.
- Trioral – I haven’t had the chance to try this one but it received rave reviews from someone I trust, so it goes on my recommendations list!
- Vitassium and SaltStick – love, love this brand–they recently discontinued their drink mix but they’re working on some new products. They launched a brand new Extra Strength electrolyte capsule that I tried and like, and they also have some great electrolyte fast chews that are like sweet/salty SweeTarts.
Products my friends and I like
- Apple Watch
- blood pressure cuff
- cold packs
- compression stockings
- Dr. Bronner’s Peppermint Organic Lip Balm
- First Aid Bag – this is where I keep the meds I’m currently taking
- Headache Hat
- heating pad
- Instacart membership (use my invite code!)
- JVN Air Dry Cream
- Owala Tumblers and water bottles
- Peace of Mind On-The-Spot Relief by Origins peppermint cream
- portable fan
- pulse oximeter
- rechargeable hand warmer
- Revlon One-Step Hair Dryer and Volumizer Hot Air Brush
- Rinse Laundry Service (use my invite code!)
- shower seat
- Squatty Potty
- Tile OR AirTag
- wearable neck fan
- weighted blanket OR lightweight swaddle blanket
Other people who have brilliant resource pages