Significant work in progress, last updated December 2018.
- Chronically Ill & In Pain Bloggers/Writers
- Living with Chronic Illness/Pain
- Newly Diagnosed or Suspect You Have A Chronic Illness?
- Low Spoons/Energy Resources & Getting Through the World
- Twitter Chats and Social Media Hashtags
- For Families, Friends, and Allies
- Broadly Focused Organizations and Groups
- Diagnosis-Specific Organizations and Groups
- Ableism, Mistreatment, and Systemic Issues
Chronically Ill & In Pain Bloggers/Blogs/Writers
- WheelieWifee
- Spoonie Living
- My Hidden Life: Stories of Illness and Disability
- Chronic Illness Problems
- Esmé Weijun Wang
- Fashion Fatigue
- Disability Health
- zebra riki
- cloudy with a chance of spicy autism
- neurowonderful
- You Might Be a Spoonie If…
- Hospital Glam
- Mortuary Report
- Lords of the Spoons
- The Chronic Struggle
- A Chronic Voice
- Kirsten Schultz
- Leah Lakshmi Piepzna-Samarasinha
- Annie Elainey
- Carolyn Zaikowski
- Spoonie Life Hacks
- Just Hypermobile Things
- Liminal Nest
Living with Chronic Illness/Pain
- In Memory of Unicorn Jess
- The Monopoly Game of Pain
- I’m Chronically Ill and Afraid of Being Lazy
- Functional, the Webcomic by Misha D. Nova (@starryamory)
- Having an Invisible Illness (illustration)
- What I Wish Healthy People Knew About Being Undiagnosed
- I Was Once The Writer Kelly Davio
- A History of Present Illness
- What No One Told Me About Chronic Pain
- The Parts of My Chronic Illness You Don’t See
- The Chronic Pain PSA
- My Body’s Bad Glue
- Performance of a Lifetime: On Invisible Illness, Gender, and Disbelief
- Skirmishes: A tour of duty on the genetic battlefields of cystic fibrosis
- On becoming disabled/politically disabled
- Random Ehlers-Danlos PSA Time (just because you’re not bendy doesn’t mean you’re not wobbly)
- The Fork Theory
Newly Diagnosed or Suspect You Have a Chronic Illness?
- Chronically Badass zine by Spoonie Living (you can input $0 and pay nothing for it! but if you can afford to, donate :D)
- Spoon theory – good introduction
- On Loss, Chronic Illness, and Acceptance
Low Spoons/Energy Resources, Lifehacks, Getting through the World
- Scripts for Talking to Doctors
- autisticandpoor (Tumblr)- DIY stim toys/household things, and low spoons cooking on a tight budget
- autisticcooking (Tumblr) – low spoons cooking
- Low spoons/minimalist minimeals on Reddit
- autisticlifehack (Tumblr) – “life hacks” for autistics to get by in the world, go to http://autisticlifehack.tumblr.com/tags for life hacks that could be applicable to autistics and non-autistics alike
- lowspoonsgourmet (Tumblr) – low spoons cooking
- A cane how-to guide
- Chronically Badass zine
- Small Spoonie Tips (especially for bed-bound or partly bed-bound folks)
- All My Spoonie Student Resources
- Medical Debt Related Resources
- Symptom tracker for autoimmune and invisible illnesses (Flaredown)
- ACPA pain log app
- Medication management
- eMoods app for Android
- My Pillbox app
- Lords of the Spoons
- Chronically Academic (chronic illness and disability in higher ed)
- Spoonie Life Hacks
- How to Find Work While Dealing wiht A Long Term Medical Condition (not applicable to everyone)
- Ehlers-Danlos Patient Webinars
- List of Ehlers-Danlos support groups and charities
- EDS Helpline from the Ehlers-Danlos Society
- Loose Connections e-magazine (EDS)
Twitter Chats and Social Media Hashtags
- Ehlers-Danlos chat (#EDSchat)
- #chronic illness
- #spoonie
- #spooniechat
- #spoonielife
- #chronicallyawesome
- #actuallychronicallyill
- #hospitalglam
- #chronicpain
- #chroniclife
- #BesideChronicBedside
For Family, Friends, and Allies
- Educator-Parent Guide (Meeting the Needs of the Ehlers-Danlos Child)
- The Parts of My Chronic Illness You Don’t See
- What I Wish Healthy People Knew About Being Undiagnosed
Broadly Focused Organizations and Groups
- The Literal Heart (Tumblr, Facebook page) – Washington D.C. metro area support group, but will have resources for those outside the area too!
- The Invisible Disability Project
- The Pillow Fort (UK)
Diagnosis-Specific Organizations and Groups
- The Ehlers-Danlos Society
- Hypermobile/Ehlers-Danlos Autistics & other Neurodivergents: Facebook group for Autistic and other neurodivergent individuals with Ehlers-Danlos.
- EDS DC Support Group
Ableism, Mistreatment, and other Systemic Issues
- Live by the Epi-Pen, Die by the Epi-Pen
- The Last Thing We Need is a Sin Tax on Opioids
- #CripTheVote chat on opioids and chronic pain
- On Chronic Pain and the “Opioid Crisis” – A Disability Issue
- When suck it up becomes the only pain treatment you are offered
- I Was Once The Writer Kelly Davio
- People with Pain Matter: A Logical Response to Pain Management Issues in the United States
- Are Writing Communities a “Game for the Healthy?”
- Why medical gaslighting doesn’t help
- When Abled People Make “That Chair” The Enemy
- Performance of a Lifetime: On Invisible Illness, Gender, and Disbelief
Other
Paginated Thoughts 