Explaining Chronic Illness to Kids Or: How Not to Accidentally Terrify a Nine-Year-Old January 2026 By Antonia @Unremarkable MeThere comes a moment, usually quiet and slightly sideways, when you realise a child has noticed.Not in the d...

Talking to children about chronic illness doesn’t have to be heavy or frightening. Calm truth, gentle language, and a reminder that love doesn’t disappear when bodies get complicated.
#ChronicIllness #KidsAndHealth #UnremarkableMe #hEDS #EDS #ChiariMalformation
www.unremarkableme.com/post/explain...

I Didn’t Disappear. I Was Busy Surviving 23 December 2025Author: Antonia @UnremarkableMeFor the last six months, Unremarkable Me went quiet.Not in a dramatic, flounce off stage kind of way. There was no announcement, no carefully worded post...

Chronic illness doesn’t come with neat story arcs. Sometimes there’s no crisis. No recovery. Just the long middle where staying alive takes everything you have. #EDS #NHS #ChiariMalformation
#ChronicIllness
#InvisibleDisability
#UnremarkableMe

www.unremarkableme.com/post/i-didn-...

youtube.com/watch?v=J11K... @uriebay.bsky.social @beyerstein.bsky.social @tomlevenson.bsky.social @anniegirl.bsky.social @doloresquintana.bsky.social @merlinofcanada.bsky.social @maej43.bsky.social #Kudos to these poor parents. 4 kids with #ChiariMalformation

New Painting: Chiari Out. This painting honors the medical condition known as the Chiari Malformation type 1, where the brain herniates and compresses out of the skull. Symptoms can include dizziness and headaches among others.

#artseller #chiarimalformation #watercolorpainting #watercolor #brain

I absolutely do deal with this especially from the five surgeries I had. Always keep in mind you don't know what battles people are fighting. Be kind and help when you can to others.

#Chiari
#ChiariMalformation
#ChiariMalformationAwareness

🎙️ New on the ESMRMB Podcast:
Living with Chiari Malformation – Part 2 💜

Dr. Moss Zhao talks with Lisa Reuter-Clarke about her diagnosis, MRI experiences & decompression surgery, and what it’s really like to live with Chiari.

🎧 Listen👉 open.spotify.com/episode/0Y5o...

#ChiariMalformation #ESMRMB

the life of someone with spina bifida & chiari malformation 🤪
.
#wearamask #disabled #disabledlatina #boricua #cubana #spinabifida #chiarimalformation

Chiari malformation: cerebellum extends into spinal canal, causing "tussive headaches" (worse with coughing/sneezing), vision issues & swallowing problems. Brainstem pressure can also affect autonomic nervous system.
https://dysautonomiasupport.pulse.ly/r2gjvet7e0
#ChiariMalformation #Dysautonomia

🧠 Prone vs. sitting for Chiari I surgery in kids: no difference in complications, but sitting had shorter op time—especially in high BMI patients. A safe alternative when done by experienced teams?
🔗 doi.org/10.1016/j.jo...
#Neurosurgery #Pediatrics #ChiariMalformation #NeuroTwitter

Things that are hard when you’re mentally exhausted #chiarimalformation #chronicpain #chronicillness

Balance #chiarimalformation #chronicpain #chronicillness

Healing #chiarimalformation #chronicpain #chronicillness

New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders 2025

buff.ly/dd78kd5

#EDS #hEDS #HSD #Hypermobility #CCI #Chiari #ChiariMalformation #Neurology #Zebras #CCS #MedEd #MedSky #Medicine #CTD #Doctors

EDS & PINGING: The Sensory Overload No One Warns You About By Antonia | Unremarkable MeLet me paint you a scene. You walk into a room—it’s loud, crowded, smells faintly of cheap perfume and burnt toast, and the lighting is flickering like it’s trying to Morse...

Welcome to the world of EDS & pinging—where sensory overload gets loud.
UnremarkableMe.com
#EDS #SensoryOverload #ChronicLife #UnremarkableMe #Neurodivergent #InvisibleIllness #MedicalZebra #Hypervigilance #EDS #hEDS #EDS&Chiari
#Chiarimalformation

www.unremarkableme.com/post/eds-pin...

Pacing #chiarimalformation #chronicpain #chronicillness

UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation

UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation

UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation

The Good That Chronic Illness Gave Me (No, Really.) By Antonia @ Unremarkable Me Published June 2025Let’s start with something that feels… weirdly hopeful.I’ve spent years reading, researching and writing about how chronic illness dismantles a life—bec...

Chronic illness took a lot from me. But it also gave me something I never had before: time—to reflect, to reconnect, to be.
UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation

www.unremarkableme.com/post/the-goo...

#Unremarkableme.com
#EDS #ChronicIllness #UnremarkableMe #EDS&Chiari
#hEDS #ChiariMalformation

#UnremarkableMe #EDS&Chiari #hEDS #EDS #Chronicillness #ChiariMalformation

The Battle of the Wards: How Outpatient and Inpatient Care Became a Tug of War (and Why We’re the Ones Getting Rope Burn) By Antonia at Unremarkable MeWhere the System Ends and We BeginI’ve always said that navigating chronic illness is like being forced to play a game you don’t understand, where the rules change halfway...

When inpatient and outpatient teams stop working together, patients get caught in the crossfire. It’s not just miscommunication—it’s system failure.
#ChronicIllness #HospitalCare ##EDS&Chiari #EDS #hEDS #UnremarkableMe #NHS #chiariMalformation

www.unremarkableme.com/post/the-bat...

When Gravity Wins: Living with a CSF Leak (and Getting Anyone to Listen) By Antonia @ UnremarkableMe – Published June 2025Living with a chronic illness is like trying to solve a puzzle where the pieces keep changing shape. You get used to the daily discomforts, the strange...

When your brain starts sinking and no one believes you, it’s not just in your head. It’s a CSF leak—and it’s time we talked about it. No jargon. Just truth.
#CSFLeak #EDS #ChronicIllness #UnremarkableMe #EDS&Chiari #PatientVoices #hEDS #ChiariMalformation

www.unremarkableme.com/post/when-gr...

#UnremarkableMe #EDS&Chiari
#chronicIllness #EDS #hEDS #Chiarimalformation

Part Two: We’re Done Being the Quiet, Compliant Patients By Antonia at Unremarkable Me Published: June 2025Following on from Part One:If you’ve already read Part One, then you know where this all began.It was a story not just about rare diseases like Chiari...

Part 2 is here:This one’s for the brave—patients, doctors, and everyone ready to build something better.
Let’s start. Together.
#ChronicIllness #EDS #hEDS #EDS&Chiari #ChiariMalformation #PatientAdvocacy #HealthcareJustice

www.unremarkableme.com/post/part-tw...

#UnremarkableMe #EDS&Chiari
#Chronicillness #EDS #hEDS #ChiariMalformation

#UnremarkableMe #EDS&Chiari
#EDS #ChronicIllness #hEDS
#ChiariMalformation

How to Hunt Medical Research Without Losing the Plot By Antonia @ Unremarkable Me(Chronically ill, hilariously tired, and powered by sarcasm and sheer spite.)Let’s be brutally honest for a second.If you live with conditions like Chiari Malformation, Ehl...

Tired of hearing “There’s no research on that”? Same. So I wrote a guide for becoming your own research detective—without losing your mind #unremarkableme.com
#ChiariMalformation #EDS #EDS&Chiari #ChronicIllness #ChiariMalformation #BeYourOwnAdvocate #hEDS

www.unremarkableme.com/post/how-to-...

#Unremarkableme #EDS&Chiari
#EDS #hEDS #ChiariMalformation
#Chronicillness