Resources
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
Blogs & Websites
Invisible Illness Awareness Network – highly recommend them! they put on great in person and virtual events
Social media accounts
alexsmentalhealth - shares great hygiene tips for when you don’t have the energy to care for yourself
caveofbeauty - shares hygiene tips for low energy days
thenotoriousnef - gives fantastic skincare education and tips on hygiene for the chronically ill
Websites and social media accounts of doctors, scientists, health care professionals I trust
Not all of these doctors are specific to dysautonomia, but I trust their advice, educational background, and that they are not trying to exploit patients. If you see anyone on here that you believe is untrustworthy in any respect, please let me know so I can remove them.
Emily Rich, OT (website) — can’t say enough nice things about her! Her website has so many resources
Facebook support groups
POTS (all ages)
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)
Counter-pressure techniques for patients with syncope (by Cleveland Clinic) - this is great for all dysautonomia patients and people with poor blood flow, not just those who experience syncope!
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
Lifestyle Measures (via Vanderbilt Autonomic Dysfunction Center)
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)
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!)
Helpful TikTok and Instagram Posts
Apps, tools, databases, etc.
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
Job Accommodation Network – free guidance on workplace accommodations for disabilities
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
Shotsy - this is for anyone who happens to be on a GLP-1, but it’s a fantastic symptom tracker
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 (and everything written and/or edited by Alice Wong)
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
Principles of Autonomic Medicine by Dr. David Goldstein (free online download)
Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig
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
Behind the Visible – feature length film on POTS by amazing husband wife filmmaking team Ashley and Cort Rippentrop
Crip Camp – Oscar nominated documentary on the early disability rights movement, focused on a 1970s camp in New York for teens with disabilities
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
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 a trillion different supplements, I’m listing the ones that I enjoy the most and have heard the best things about.
DripDrop – easy to find at drug stores
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. Sign up for their Vitassium Club to save more money on your orders!
Gatorade Zero - compared to its contemporaries, it doesn’t have nearly as much sodium as you need, but it’s the most accessible option out there. An ice cold RED Gatorade Zero on a high symptom day is pretty choice.
How to create your own electrolyte drinks (recipes and guides from trusted sources)
Cleveland Clinic’s Health Essentials: Rebalance, Replenish: 4 Sources of Electrolytes
Good RX: Can You Make Pedialyte at Home? Yes, Here’s How to Do it Safely
Utah State University’s Create Better Health: Sip Smart: Homemade Electrolyte Drink Recipe
Products my friends and I like
First Aid Bag – this is where I keep the meds I’m currently taking
Instacart membership* (this is a referral link, we both get discounts if you use it!)
Peace of Mind On-The-Spot Relief peppermint cream by Origins
Rinse Laundry Service* (this is a referral link, we both get discounts if you use it!)
shower seat
Warmies* (this is a referral link, we both get discounts if you use it!)
Services that save my life
* (this is a referral link, we both get discounts if you use it!)
Other people who have brilliant resource pages