Dysautonomia Directory
Connecting the writers and readers shaping the dysautonomia conversation on Substack
All Hands on Deck
To wrap up Dysautonomia Awareness Month, I wanted to share a handful of Substack newsletters that provide helpful information, insights, and community around dysautonomia and related conditions. This directory brings together both professional perspectives and lived experiences, highlighting writers whose work I deeply respect and whose contributions have helped move this conversation forward.
Discussions of dysautonomia often overlap with topics like Long Covid, Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic conditions. Because dysautonomia affects so many systems in the body—and often coexists with these conditions—there aren’t many newsletters dedicated solely to it. The writers featured here share resources, education, and guidance on these overlapping topics, while also providing some fantastic insights specifically on dysautonomia.
In recent years, there has been a noticeable rise in dysautonomia diagnoses, particularly among those with long COVID. With this increase, having accessible, reliable resources has become even more important—and I hope this directory makes it easier to find voices that can educate, inform, and connect those navigating the condition.
Health Care Professionals
Dr. Zeest Khan — Long Covid, MD
Dr. Khan shares her dual perspective as both a physician and someone personally navigating long COVID. Her newsletter and podcast explore the intersections between long COVID and other complex chronic conditions. I highly recommend reading her article and listening to her podcast about the connection between dysautonomia and Long Covid, featuring dysautonomia expert Dr. Alba Azola.
Dr. Linda Bluestein - The Bendy Bulletin
Dr. Bluestein focuses on conversations about EDS and related conditions, including dysautonomia. This newsletter is a fantastic resource for those with hypermobility and connective tissue disorders. It also explores the connection between these and dysautonomia. Attached is one of her articles discussing this relationship.
Cortney Gensemer, PhD - Life and Science with Cortney
Dr. Gensemer is a research scientist studying EDS and related comorbidities like POTS and MCAS as well as living with the conditions herself. She dives deep into the science and breaks down these complex chronic conditions in a digestible way. I highly recommend checking out her work!
Patient Perspectives
Kelly’s newsletter discusses topics related to chronic illness, disability, and health politics. Diagnosed with POTS (a type of dysautonomia) in 2017, she’s gained a lot of wisdom and perspective from years of navigating this condition. Posts such as Living Life Upside Down, It’s Just Anxiety (Or Perhaps They’ve Missed Something), and Learning to Live Horizontally are great pieces that discuss the realities of living with POTS as well as some evidenced-based strategies for managing the condition.
Zebras Underground is a great resource for those with dysautonomia and commonly comorbid conditions like EDS and MCAS. The newsletter features an impressive range of content for paid subscribers—from introductory dysautonomia education and hydration strategies to medication overviews and symptom management. A few of their dysautonomia centered reads include Best POTS Meds: Dys Doctor Deep Dive, Is It Anxiety or Is It Dysautonomia?, and Electrolyte Exposé: The Real Deal on Salt.
Amy shares her journey with long COVID, POTS, ME/CFS, and other chronic conditions. The “Antidote – links for the health curious” section at the end of most posts is a goldmine of research, tools, and thoughtful commentary. Her mix of insight, memes, and wit makes her newsletter one I look forward to every week!
Looking Ahead
In the future, I hope to create a similar directory focused on Long Covid resources, as there are so many incredible voices exploring its overlap with dysautonomia and other chronic illnesses. It’s encouraging to see this space growing—and the connections between these conditions receiving more attention and awareness from both patients and professionals.
Closing Thoughts
The dysautonomia community on Substack may still be small, but it’s informed and deeply compassionate. Each of these writers contributes something unique—from clinical expertise to lived experience—helping us better understand this complex condition.
I’m sure I’ve missed some excellent articles or newsletters, so please share any of your favorites in the comments—I’d love to read and subscribe. And to the authors featured here: thank you for your work, dedication, and vulnerability in bringing this topic to light. Let’s continue learning from one another and expanding this conversation to make information and supportive community more accessible to those living with dysautonomia.
Thanks for Your Support!
My goal is to keep my work free and accessible to the chronic illness community. Living with chronic conditions can be financially draining, and for many of us who are partially or fully disabled, accessing support and care can feel out of reach.
I have recently enabled the paid subscriber feature, but will never paywall my work. This is simply for anyone who has the means to contribute and would like to support financially. Or if you’ve found this article to be helpful, I’ve set up a Buy Me a Coffee page—a virtual tip jar where you can make a small donation if you’d like.
Your support helps make it possible for me to continue pouring time, research, and lived experience into creating these resources.
Whether you’re able to contribute or not, I’m so grateful you’re here. Thank you for being part of this community. 💛
Thank you for posting this directory. I just started Dysautonomia Journal about my journey with Orthostatic Hypotension, a form of Dysautonomia and how I got it--NOT from Covid. I hope you will check it out. I plan to post weekly.
I enjoy reading here and learning in this environment. It is my hope that my substack will add depth to the conversation.
https://dysautonomiajournal.substack.com/p/the-day-everything-tilted
Thank you so much for taking the time to write this article. I haven't pulled up any of these Substacks. They didn't appear in my searches. Just invaluable information to have more connections with those who understand dysautonomia. Thank you 1000 times!