Chronic Pain Partners - EDS Awareness

Chronic Pain Partners - EDS Awareness

@cppedsa.bsky.social

An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians about the Ehlers-Danlos Syndromes and related conditions. https://chronicpainpartners.com

917 followers1.2K following401 posts

Chronic Pain Partners - EDS Awareness reposted

A Chronic Voice
@achronicvoice.com

"How do I explain a condition like #EhlersDanlosSyndrome without giving a #biology lecture?..There is no quick..summary that does my experience justice..yet, people ask, well-meaning..unaware of the #emotional labor they’re requesting.": buff.ly/WaJoOKD via @cppedsa.bsky.social #EDS #ChronicIllness

buff.lyThe Quiet Weight of Chronic Illness Grief – EDSAwareness.comLiving with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I…

Chronic Pain Partners - EDS Awareness reposted

A Chronic Voice
@achronicvoice.com

“After 14yrs of walking #alone, this flood of #support felt surreal like stepping into warm water after yrs of winter cold. They say “This is #normal. This is how #care is meant to be.” It still feels strange. Beautifully strange.”: buff.ly/8UcRXUc via @cppedsa.bsky.social #kindness #humanity #poem

buff.lyThe Silence After Survival – EDSAwareness.comThis week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.

Chronic Pain Partners - EDS Awareness reposted

A Chronic Voice
@achronicvoice.com

"A call from #school, a #son in shock, another #ambulance racing against time. All the old fears returned the ones that ask whether anyone will listen, whether we will once again be asked to prove our reality.": buff.ly/WP3heC3 via @cppedsa.bsky.social #allergies #motherhood #ChronicIllness #parent

buff.lyThe Silence After Survival – EDSAwareness.comThis week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.

Chronic Pain Partners - EDS Awareness reposted

Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social

The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible buff.ly/zTVAuva #EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Disability #Autism #ADHD #AuDHD #Dyslexia #Dysgraphia #Dyscalculia #Dysautonomia #MCAS #Mastocytosis #Fibromyalgia #Spoonies #MedSky #Zebras

Chronic Pain Partners - EDS Awareness reposted

Emily Johnson
@emilyrj.bsky.social

Replying to @emilyrj.bsky.social

I was diagnosed with #EDS 6 years after @cppedsa.bsky.social began The resources John Ferman and others at Chronic Pain Partners/EDS Awareness shared were invaluable, especially in an era before social media made research, clinician and medical care info easier to find Thank you 💜

Chronic Pain Partners - EDS Awareness reposted

A Chronic Voice
@achronicvoice.com

"We did not have to fight. Not this time. Not in that room. Not with those people... And I… I didn’t know how to stand in a place where #compassion came freely. I felt unsteady, unfamiliar with relief.": buff.ly/emeCUhA via @cppedsa.bsky.social #ChronicPain #PatientCare #healthcare #nurse #doctor

buff.lyThe Silence After Survival – EDSAwareness.comThis week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social

Please join us in giving a warm welcome to TWO new writers at Chronic Pain Partners: -Research specialist and health communicator Amy Weintraub and... -Clinical research coordinator and disability advocate Tayler Goectau! We look forward to their contributions! #EDS #hEDS #HSD #zebras

Chronic Pain Partners - EDS Awareness reposted

Whatkonnerth
@whatkonnerth.bsky.social

Replying to @cppedsa.bsky.social

"There's not a lot we can do for people like you." Like really? I'm unwell and you are a Dr. Bloody get some up to date information and help me. I'm actually paying you!

Chronic Pain Partners - EDS Awareness reposted

A Chronic Voice
@achronicvoice.com

"Every time I reach a place of #acceptance, something shifts. The [ #grief ] cycle begins again..There’s no closure when the #trauma is ongoing. I long for #predictability. I crave #stability. Just a moment to breathe.": buff.ly/Zcl84Ml via @cppedsa.bsky.social #ChronicIllness #EDS #NEisVoid

buff.lyThe Quiet Weight of Chronic Illness Grief – EDSAwareness.comLiving with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I…
Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social

You doctor said what??~! 😄 Our doctors have all said some doozies over the years as we struggle to get diagnosed. Share your favs in the comments. (No MD names!) #EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #MCAS #POTS #Dysautonomia #zebras #NEISvoid

Chronic Pain Partners - EDS Awareness reposted

A Chronic Voice
@achronicvoice.com

“After 14yrs of walking #alone, this flood of #support felt surreal like stepping into warm water after yrs of winter cold. They say “This is normal. This is how care is meant to be.” It still feels strange. Beautifully strange.”: buff.ly/88SnqSr via @cppedsa.bsky.social

buff.lyThe Silence After Survival – EDSAwareness.comThis week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.

Chronic Pain Partners - EDS Awareness reposted

Chronic Pain Partners - EDS Awareness
@cppedsa.bsky.social

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025 buff.ly/UPemeY6 #EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

buff.lyThe Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.comDr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.