Chronic Pain Partners

05/29/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize. And sometimes more than we expect ourselves!

Meet artist: Kaleena Deshawn, aka

05/21/2026

Chronic Pain Partners / EDS Awareness is very happy to welcome TWO new writers to our tiny but mighty media team!

Please join us in welcoming research specialist and health communicator Amy Weintraub, and clinic research coordinator and disability advocate Tayler Goectau.

We're happy to add their experience and talent. Stay tuned for their contributions as we chug along.

05/20/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies. Not only between people, but for the same person on different days.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize.

Meet Jeevan Mann, biomedical researcher and EDS advocate.

05/13/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies across all domains and across time.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize.

Meet Jacqueline Teti, CPP Editor-in-chief and Director of Programs:

05/12/2026

Wait - your doctor said what??~!

We’ve all heard some doozies from our doctors over the years as EDS/HSD patients, diagnosed or not. Things like:

• ‘You can’t have that, you’d be in a wheelchair.’
• ‘There’s nothing we can do for you.’
• ‘Only women/men/________ have that.’”

What are some of the outrageous things your doctors have said to you? Drop them in a comment below. (No actual doctor's names please for liability reasons, just their whacky words!)

We'll gather these up in an article to share later in May. (We'll keep you anonymous, don't worry!)

05/07/2026

Don't forget "Complicated" is coming to Apple TV May 19th!

COMPLICATED is coming to Apple TV on May 19! You can also watch it now on the complicatedthemovie.com online store.
Note, If the film gets enough pre-orders on Apple TV then it will get the highest possible placement on the platform, ensuring high visibility. Please pre-order now and share this call to action with others. It will help our cause immensely:
https://tv.apple.com/.../umc.cmc.6u10itqj2ei16o26u1ofsptda
Also, distributors pay attention to IMDb ratings. Help by going to the COMPLICATED page and rate the film on IMDb with a "10" in the upper right hand corner of the page. We need over a hundred ratings to get positive traction with distributors. It only takes a few seconds:
https://www.imdb.com/title/tt19064024

05/07/2026

For May, EDS Awareness Month, we are sharing the many ways we show up in the world both with and despite EDS and HSD. Showing how it's important to never assume almost anything about us, or about anyone for that matter.

While we may not always keep up with those without a connective tissue disease, we often can do more than some people think, though usually for a price. And sometimes we can do less. It really varies.

And just like zebras, no two people with EDS or HSD are alike, even with the same type. But we are a very ambitious group on the whole, often accomplishing a lot of things while managing much more than most people realize.

Meet Krista Brack, support group leader and rare disease advocate:

04/30/2026

THIS SATURDAY May 2nd at 2 PM US EST Join our special online screening & meet the families from COMPLICATED after for just $3 USD!

Don't miss this rare chance to view the film online for just $3 USD, worldwide via Eventbrite! And enjoy a discussion with some of the families from the film afterwards. Co-sponsored by the Connective Tissue Coalition and EDS Awareness/Chronic Pain Partners. The film can normally be streamed on demand from Open Eye Pictures for $14.99.

This is a very powerful film, in contention for an Oscar. It's helping to engender some changes in the medical system to help avoid the complications caused by unnecessary medical kidnap and medical over-reach in the future. Catch it if you can, you will be moved... and uplifted in the end!

https://www.eventbrite.com/e/join-our-special-online-screening-meet-the-families-from-complicated-tickets-1986554890153

04/30/2026

Horizontal Parenting: 5 Strategies I Used After Surgery as a Disabled Single Mom

How a very disabled single mom with EDS, POTS, MCAS and much more, requiring surgery herself after the premature birth of her special needs son managed to continue to parent him successfully from bed during her own recovery.

'I’ve learned that being a “good” parent doesn’t always mean having a clean home or a four-course meal; it means prioritizing connection and care over perfection. I had to learn radical acceptance for “pajama days” and to let non-essential tasks, like dishes, wait so I could preserve my limited energy for my child.'

https://www.chronicpainpartners.com/horizontal-parenting-5-strategies-i-used-after-surgery-as-a-disabled-single-mom/

04/29/2026

Hi everyone! Thank you so much for all of your interest in our monthly stipend-based writing job. But we have been flooded with interest from so many amazing talented writers already, we do not need any more applications.

This job post is now CLOSED and we will be filling the position soon.

Thank you for your interest and passion everyone! CPP Media Team April 29, 2026.



Image Description:
Flyer with text and graphics about a paid writer position.

Text at the top:
“Paid writer wanted!
Monthly stipend!”

In the top left corner:
“EDS Awareness
Ehlers-Danlos Syndromes”

Large red stamped text in the middle and right:
“CLOSED”

Text on the right side under the red “CLOSED”:
“April 29, 2026:
Thank you for your interest! We have plenty of applicants now!”

Text at the bottom:
“www.chronicpainpartners.com”