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unremarkableme.bsky.social
Unremarkable Me
@unremarkableme.bsky.social
500 followers 1.2K following 320 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.
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Unremarkable Me @unremarkableme.bsky.social · Jun 12
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...
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Unremarkable Me @unremarkableme.bsky.social · Jun 16
UnremarkableMe.com #hEDS
#EDS&Chiari
#ChronicIllness #EDS #POTS #DisabilityAwareness #UnremarkableMe #StillHere #ChiariMalformation
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Unremarkable Me @unremarkableme.bsky.social · Jun 24
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...
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Unremarkable Me @unremarkableme.bsky.social · Jun 19
#UnremarkableMe #EDS #hEDS #EDS&Chiari
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achronicvoice.com
A Chronic Voice @achronicvoice.com · May 18
“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
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ciaraarmstrong.bsky.social
Ciara @ciaraarmstrong.bsky.social · May 25
My sister has one, my cousin has one, I have almost identical symptoms as them, but I can’t get a diagnostic MRI. Would love a wealth tax to pump $ into health so we have access to more resources…. It’s about $3.5 thousand dollars for an MRI privately, so that’s a no.
#Kikorangi #nzpol
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Unremarkable Me @unremarkableme.bsky.social · Mar 13
Chiari Malformation:When the brain pushes past its boundaries, it’s more than just a headache. Let’s talk about symptoms, challenges, and what it means for those with EDS.
#UnremarkableMe
#ChiariMalformation #hEDS #EDS #Neurology #ChronicIllness

www.unremarkableme.com/post/chiari-...
Chiari Malformation: When Your Brain Overstays Its Welcome
Ah, the human brain—nature’s most ambitious game of Tetris. A marvel of biology, packed into our skulls with just the right amount of space… unless, of course, you have Chiari Malformation.Then it’s l...
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achronicvoice.com
A Chronic Voice @achronicvoice.com · Sep 3
“ #Curiosity is Power. The more you learn, the more control you reclaim. #Knowledge won’t cure you, but it will help you make sense of the chaos.": buff.ly/9SRfgQy

#ChronicIllness #ChronicPain #disability
by @unremarkableme.bsky.social
Disability Guilt:Losing, Finding, and Learning to Live Again: The Emotional Journey of Chronic Illness
Imagine this. You’re walking through life, minding your own business, maybe even humming your favorite song, when suddenly—bam!—the ground gives way beneath your feet.One minute, everything is…
buff.ly
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Unremarkable Me @unremarkableme.bsky.social · Mar 27
#NHS #NHSENGLAND
#UnremarkableMe
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Unremarkable Me @unremarkableme.bsky.social · Mar 14
Is cannabis legalization the answer for the UK and NHS? Let’s explores potential benefits, challenges, and what it could mean for healthcare. #CannabisUK #NHS #Legalisation #Healthcare #UKPolitics #MedicalCannabis #EDS #Chronicillness #UnremarkableMe
#hEDS

www.unremarkableme.com/post/is-it-h...
Is It High Time? The Case for Cannabis Legalization in the UK (and What It Means for the NHS)
Let’s take a deep breath and roll into the haze of cannabis legalization. The UK’s National Health Service (NHS) is holding on by a thread, and people are wondering: could cannabis legalization provid...
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Unremarkable Me @unremarkableme.bsky.social · Apr 19
Living with EDS, a rebellious collarbone, and a brain that just won’t sit still. Join me on this bendy, bony, brain-squishing ride. #EDS #ChiariMalformation #ChronicIllness #SpoonieLife #hEDS #zebrastrong #UnremarkableMe #BeKindToYourself

www.unremarkableme.com/post/living-...
My Journey: EDS, Clavicle Chaos, and Chiari Malformation.
By Antonia@UnremarkableMe, Professional Human Pretzel and Part-Time Chaos Coordinator.If my life were a symphony, my connective tissue would be playing out of tune while the conductor stares blankly a...
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Unremarkable Me @unremarkableme.bsky.social · Apr 23
You’ve got a diagnosis! Now what? Oh… right. The hope, the heartbreak, the “fix it” fantasy. Let’s talk cruel optimism and what really comes next. #ChronicIllness #DiagnosisJourney #NHS #EDS #hEDS #UnremarkableMe #UnremarkableMe #BeKindToYourself

www.unremarkableme.com/post/so-what...
“So… What Now?” The Cruel Optimism of Diagnosis
By Antonia at Unremarkable Me – who once genuinely believed that getting a diagnosis would mean getting a solution. There’s this story we’re all sold—the idea that once you’re diagnosed, the hard part...
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Unremarkable Me @unremarkableme.bsky.social · May 19
Ghosting and Chronic illness. 👻 Here’s why we fade, and how we reclaim space on our own terms.
#ChronicIllness #InvisibleDisability #EDSLife #MCAS #POTS #UnremarkableMe #Ehlersdanlos
#ChiariMalformation

www.unremarkableme.com/post/when-th...
When the Ghost Is You: Why People with Chronic Illness Disappear (And How We Can Show Up in Our Own Way)
By Antonia at Unremarkable MeConfession time: I ghost people.I ghost friends, family, chat groups, even the pizza delivery guy once because I couldn’t cope with the doorbell. But before you slap a “ba...
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Unremarkable Me @unremarkableme.bsky.social · Jun 9
When your bowels stage a French Revolution mid-hospital stay and your enema feels like it lied on its CV… this one’s for you.
#ChronicIllness #EDS #hEDS #ChiariMalformation #ConstipationChronicles #EDS&Chiari #UnremarkableMe #ToiletTrauma

www.unremarkableme.com/post/the-gre...
The Great Bowel Rebellion
By Antonia at Unremarkable Me(Chronically ill, hilariously constipated, and just trying to poop in peace.)Some people bond over cocktails or concerts. I bonded with my best friend Shilpa over bum clea...
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Unremarkable Me @unremarkableme.bsky.social · Jun 17
#UnremarkableMe #hEDS #EDS #EDS&Chiari
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Unremarkable Me @unremarkableme.bsky.social · Jun 20
Floating ribs and EDS are a match made in chaos. Ever felt that stabby pop under your ribs? You’re not alone.
UnremarkableMe.com
#EDS #SlippingRibSyndrome #Hypermobility #ChronicPain #UnremarkableMe #InvisibleIllness #ChronicIllness #EDS #hEDS #EDS&Chiari

www.unremarkableme.com/post/the-rib...
The Rib That Slipped: When Your Floating Ribs Go Rogue
By Antonia | Unremarkable MeLet’s be honest—ribs aren’t high on the list of things most people worry about. They’re just... there. Doing their ribby duties. Holding in organs. Being vaguely supportive...
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Unremarkable Me @unremarkableme.bsky.social · Jun 20
#UnremarkableMe #EDS #hEDS #EDS&Chiari
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Unremarkable Me @unremarkableme.bsky.social · Jun 10
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-...
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...
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Unremarkable Me @unremarkableme.bsky.social · Jun 13
#UnremarkableMe #EDS&Chiari #EDSUK #NHS #EDS #hEDS
#ChronicIllness #Chiari
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Unremarkable Me @unremarkableme.bsky.social · Jun 16
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...
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...
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Unremarkable Me @unremarkableme.bsky.social · Jun 19
#UnremarkableMe #EDS #hEDS #EDS&Chiari
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Unremarkable Me @unremarkableme.bsky.social · Jun 27
#UnremarkableMe #EDS #hEDS #EDS&Chiari #Chronicillness
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Unremarkable Me @unremarkableme.bsky.social · Jun 27
When EDS meets menopause, your body’s thermostat doesn’t just break—it leaves the building. Hot, cold, sweaty, shivering… sometimes all at once. Welcome to the chaos!
#EDS #Menopause #ChronicIllness #InvisibleIllness #hEDS #UnremarkableMe #EDS&Chiari

www.unremarkableme.com/post/chronic...
When EDS Meets Menopause and Your Thermostat Breaks Completely
By Antonia @Unremarkable MeLiving with Ehlers-Danlos Syndrome (EDS) is already a full-time job—complete with surprise dislocations, fatigue that could humble a bear in hibernation, and a body that tre...
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Unremarkable Me @unremarkableme.bsky.social · Jun 27
A diagnosis doesn’t stop with one person. It’s a ripple—echoing through siblings, parents, and children. The emotional math of “Is this my story too?”
#EDS #Genetics #ChronicIllness #EDS&Chiari #hEDS #InvisibleIllness #UnremarkableMe

www.unremarkableme.com/post/the-gen...
The Genetic Ripple: How One Diagnosis Echoes Through a Family
By Antonia | Unremarkable Me | June 2025Let me tell you what they don’t warn you about in the leaflets: When you’re diagnosed with a genetic condition, you don’t just inherit it—you become the family’...
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Unremarkable Me @unremarkableme.bsky.social · Jun 26
We can only hope, My Chronically ill friend 🫶 stay strong.
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Unremarkable Me @unremarkableme.bsky.social · Jun 26
Real stories. Unfiltered lives. The Unremarkable Me Podcast ‘Life As I Know It’ is coming this autumn. Chronic illness, grit, laughs, and truth—told by the people living it. Got a story? Let me be your voice . #ChronicIllness #EDS #Podcast #UnremarkableMe

www.unremarkableme.com/post/life-as...
Life As I Know It: The Podcast by Unremarkable Me
By Antonia at Unremarkable Me | Published June 2025Let’s face it—life with a chronic illness doesn’t come with a manual. It comes with paperwork, waiting lists, and a lot of unsolicited advice from st...
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Unremarkable Me @unremarkableme.bsky.social · Jun 26
2026 is coming… and so is change. New EDS & HSD diagnostic criteria are finally landing. Built on our stories. Our data. This is the beginning of being seen. #EDS #HSD #ChronicIllness #EDS&Chiari #UnremarkableMe #EDS2026 #PatientVoices #DisabilityRights

www.unremarkableme.com/post/the-202...
The 2026 EDS Criteria
🖤 By Antonia @ Unremarkable Me | Published June 2025 If you live with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), you already know the drill. You know the soul-crushing drea...
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