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unremarkableme.bsky.social
Unremarkable Me
@unremarkableme.bsky.social
540 followers 1.3K following 330 posts
Health and Wellness
EDS & hEDS Awareness
Chiari Malformation Awareness
Chronic Illness Awareness
Mass Cell Activation Syndrome
POTS


I have been fighting EDS, Chiari Malformation, Mass Cell Activation Syndrome, Scoliosis & POTS for 15 years.
Posts Replies Media Videos
unremarkableme.bsky.social
Still waiting on the new hEDS and HSD criteria? You’re not imagining the delay.Here’s what’s happening, why it matters, and what to hold onto meanwhile.
#EDS #hEDS #HSD #ChronicIllness #InvisibleIllness #PatientVoices #UnremarkableMe

www.unremarkableme.com/post/waiting...
Waiting for the 2026 Ehlers–Danlos Society Criteria”
By Antonia @Unremarkable MePublished January 2026How people with hypermobility and connective-tissue mysteries sit through science’s intermission, and why the next act mattersWhen you’ve spent years t...
www.unremarkableme.com
January 19, 2026 at 9:54 AM
unremarkableme.bsky.social
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...
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...
www.unremarkableme.com
January 16, 2026 at 2:21 PM
unremarkableme.bsky.social
Chronic illness isn’t a journey.
It’s a roller coaster with no seatbelt, no exit, and a very tired goblin holding on anyway.
#ChronicIllness #InvisibleIllness #SpoonieLife #UnremarkableMe #StillHere #ChronicPain #EDS #DisabilityVoices #hEDS

www.unremarkableme.com/post/the-emo...
The Emotional Roller Coaster of Chronic Illness
By Antonia @ Unremarkable Me | Published January 2026Living with chronic illness is not a gentle cruise down a lazy river with a straw hat and a soundtrack. It is a non-consensual roller coaster built...
www.unremarkableme.com
January 6, 2026 at 9:21 AM
unremarkableme.bsky.social
Doctors and patients are not opponents. We are allies inside a system under strain. Saving the NHS means standing together, telling the truth, and backing each other when it matters most.
#SaveTheNHS #EveryDoctor#chronic-illness #StrongerTogether#UnremarkableMe
www.unremarkableme.com/post/saving-...
Saving the NHS Is Not a Slogan. It’s a Relationship
Why doctors and patients working together might be the most radical idea we have leftBy Antonia @Unremarkable Me Published: 6 January 2026Scroll Instagram for long enough and you will see it.Save the ...
www.unremarkableme.com
January 6, 2026 at 9:12 AM
unremarkableme.bsky.social
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-...
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...
www.unremarkableme.com
January 5, 2026 at 8:01 AM
Reposted by Unremarkable Me
achronicvoice.com
"I stopped trying to fit in. I stopped apologizing for being ill. & equally important, I learned to #AskForHelp. I learned there are many ways to be seen & heard in the world. I learned the most important lesson of all: #trusting my own goodness.": buff.ly/lRtIwku

#spoonie #ChronicIllness #SelfLove
The Stories We Tell Ourselves: Prisons or Paths to Freedom
The stories we tell ourselves about chronic illness can make a difference in our lives. Here's how Rose reclaimed her freedom through narrative.
buff.ly
December 4, 2025 at 4:30 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
#UnremarkableMe #Chronicillness #EhlersDanlos #ChiariMalformation #hEDS #EDS
www.unremarkableMe.com
www.UnremarkableMe.com/Music
June 3, 2025 at 6:48 AM
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unremarkableme.bsky.social
#UnremarkableMe #chronicillness #EDS&Chiari #hEDS
June 9, 2025 at 6:09 PM
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unremarkableme.bsky.social
#UnremarkableMe #EDS&Chiari
#EDS #ChronicIllness #hEDS
#ChiariMalformation
June 11, 2025 at 6:54 AM
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unremarkableme.bsky.social
#Unremarkableme.com
#EDS #ChronicIllness #UnremarkableMe #EDS&Chiari
#hEDS #ChiariMalformation
June 16, 2025 at 8:06 AM
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unremarkableme.bsky.social
UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation
June 16, 2025 at 8:14 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation
June 16, 2025 at 8:25 AM
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unremarkableme.bsky.social
#UnremarkableMe #hEDS #EDS #EDS&Chiari
June 17, 2025 at 7:50 PM
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unremarkableme.bsky.social
Beauty tips, chaos, and chronic illness—because glam doesn’t stop just ’cause your joints do.
#ChronicIllness #BeautyWithEDS #EDS #hEDS #DisabilityStyle #SpoonieBeauty #UnremarkableMe

www.unremarkableme.com/post/beauty-...
Beauty Survival Tips from a Chronically Ill Dreadful Hippy
By Antonia@UnremarkableMe, your local dreadful hippy and professional fashle enthusiastThere’s a particular kind of magic in learning to care for yourself when your body has stopped playing fair. It’s...
www.unremarkableme.com
April 18, 2025 at 7:58 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
Wobbly spine? Brain too low? Same. 💀 Here’s my journey with Ehlers-Danlos Syndrome and Chiari Malformation—because one weird diagnosis clearly wasn’t enough.
#EDS #ChiariMalformation #ChronicIllness #UnremarkableMe #hEDS #Chiari #Chronicillnessawareness

www.unremarkableme.com/post/my-jour...
My Journey: Ehlers-Danlos Syndrome & Chiari Malformation
The Brain That Moved House (and Other Chronic Illness Shenanigans)By Antonia at Unremarkable Me I wouldn’t call myself an expert—but I’ve read, researched, interrogated specialists, double-checked stu...
www.unremarkableme.com
April 30, 2025 at 8:53 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
Denial: The worst timeshare you’ll ever inherit. Comes with guilt, excuses, and a complimentary minibar of lies. No beach. Just burnout.
#ChronicIllness #DisabilityHumour #UnremarkableMe #SpoonieLife #EDS #MCAS #POTS #InvisibleIllness #Chiari #hEDS

www.unremarkableme.com/post/denial-...
Denial: The Worst Timeshare You’ll Ever Inherit
By Antonia @UnremarkableMePublished: June 2025Let’s Talk About DenialNot the cool, off-grid kind of denial where you bin your WiFi, raise goats, and learn the banjo. No—we’re talking about the chronic...
www.unremarkableme.com
June 6, 2025 at 7:10 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
#UnremarkableMe #chronicillness
#EDS #hEDS #EDS&Chiari
#Ehlersdanlos
June 9, 2025 at 9:18 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
#Unremarkableme #EDS&Chiari
#EDS #hEDS #ChiariMalformation
#Chronicillness
June 10, 2025 at 8:42 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
#UnremarkableMe #EDS&Chiari
#chronicIllness #EDS #hEDS #Chiarimalformation
June 11, 2025 at 7:06 AM
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unremarkableme.bsky.social
#Unremarkableme #EDS #hEDS #EDS&Chiari
June 18, 2025 at 9:55 AM
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unremarkableme.bsky.social
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...
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...
www.unremarkableme.com
June 12, 2025 at 8:25 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation
June 16, 2025 at 8:25 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
You can laugh, cry, cope, collapse—and still get told you “look well.” That’s the chronic illness paradox in action.
#ChronicIllness #EDS #hEDS #EDS&Chiari #SpoonieTruth #InvisibleDisability #Chiari #UnremarkableMe

www.unremarkableme.com/post/the-chr...
The Chronic Illness Paradox
By Antonia @ Unremarkable Me | Published June 2025 I’ve had more experience justifying my mascara than some people have explaining their taxes. Because if you’re chronically ill and dare to look prese...
www.unremarkableme.com
June 24, 2025 at 7:45 AM
Reposted by Unremarkable Me
unremarkableme.bsky.social
#UnremarkableMe #EDS #hEDS #EDS&Chiari
June 19, 2025 at 9:52 AM
Reposted by Unremarkable Me
achronicvoice.com
“The current system isn’t just inefficient—it’s actively harmful..We fall between departments. We get sent home from A&E with a leaflet & the subtle suggestion that it might all be in our heads.”: buff.ly/znjIYy2

#healthcare #disability #PatientCare #ChronicIllness
by @unremarkableme.bsky.social
“Whose Problem Is It Anyway?”: Why We Desperately Need a Safety Net for Complex and Undiagnosed Patients
By Toni, writer, professional lip-reader, medical maze-runner, and reluctant NHS ninjaPicture this: You’ve bounced around the NHS for years. You’ve seen so many specialists that your medical history…
buff.ly
May 18, 2025 at 12:30 PM