#invisible-illness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #invisible-illness, aggregated by home.social.
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MS isn't always a 'brave journey'—sometimes it's just a 14th meltdown and a broken internal thermostat. 🌡️ If you’re done with the toxic positivity, these captions are for you. No filters, just the messy, wobbly truth.
#SpoonieLife, #MultipleSclerosis, #ChronicIllness, #MSAwareness, #InvisibleIllness
Read more: https://mooddrafts.com/ditch-the-fluff-real-ms-captions-for-your-darkest-days/
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Posting for World MS Day isn't just about orange ribbons—it's about honoring the 'terms and conditions' of a body that moves at its own pace. Whether you're a warrior or an ally, your voice matters. Let's make the invisible visible. 🧡
#WorldMSDay, #MSWarrior, #InvisibleIllness, #MyMSDiagnosis, #ChronicIllness, #MSAwareness
Read more: https://mooddrafts.com/world-ms-day-captions-powerful-ways-to-share-your-story/
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Today is International Awareness Day for Chronic Immunological and Neurological Diseases such as ME/CFS and Fibromyalgia.
Whether you are affected by one of these diseases, or know someone who is (Alzheimer's, Autism and Epilepsy also belong in this category, as well as many others), hopefully these conditions will be given more research and funding in the future.
It is held on Florence Nightingale's birthday as it is believed she had MECFS.
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📢Die Betroffenen brauchen dringend Allys, die für sie demonstrieren, weil viele von ihnen selbst zu krank dafür sind
📢 Sa., 9.5., 15 Uhr Sendlinger Tor
▶️ ME/CFS ist eine schwere postvirale, neuroimmunologische Krankheit, die zu einem hohen Grad an Behinderung führt.⬇️
#MECFS #LongCovid #LiegendDemo #MillionsMissing #MyalgischeEnzephalomyelitis #ChronischeErkrankungen #InvisibleIllness #Lemonchallengemecfs #KraftSocken
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So when something feels harder to name or hold, it’s often not about the reality of the symptoms, but about the way we see them. #chronicillnesssupport #invisibleillness #advocacy #spooniesupport #occupationaltherapy
Tom: Doesn’t reference ME/CFS or Long Covid but does mention Fibromyalgia
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From @onelife_livedwell on IG: Let’s talk about the disease prestige hierarchy, or the way some diagnoses are consistently seen as more legitimate and easier to recognize than others. Research shows this pattern holds over time, shaping what gets attention, funding, and clinical confidence. Layered into it is disability bias, the quiet pull to take conditions that aren’t easily fixed less seriously.
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New:
"How visible and hidden disabilities are treated differently in clinical practice"From:
Non-visible disability in the medical curriculum: what medicine overlooks, patients inherithttps://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1701393/full
#Hiddendisabilities #invisibleillness #Invisibledisability #hiddenillness #chronicillness #MEcfs #PwME #ME #MyalgicE
@mecfs -
"Psychologizing kids with asthma, in the past and today: Attributing physical illness to a neurotic personality isn't new." by K. Johnstone (Apr 18, 2026)
https://mecfs.substack.com/p/psychologizing-kids-with-asthma-in
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Invisible Illness Club Badges! 75p each https://www.koolbadges.co.uk/invisible-illness-club-p-11069.html #invisibleillnessclub #invisibleillness #badges #koolbadges #25mm #youarestrong #kindness #smallbiz #ChronicIllness #SpoonieLife #HiddenDisability #ChronicPain #Fibromyalgia #ChronicFatigue #Endometriosis
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From:
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
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🧵
"How medical training promotes medical gaslighting" by K. Johnstonehttps://mecfs.substack.com/p/how-medical-training-promotes-medical
This is not illness specific.
#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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“I’m not lazy. I’m managing a body that doesn’t cooperate.”
That’s the part people miss with chronic pain and invisible illness. Rest is often survival, not laziness.
What’s something people assume about you that couldn’t be more wrong?
#ChronicPain #ChronicIllness #InvisibleIllness #disability -
That’s what people say when they’ve never lived it.
What you don’t see:
The nights without sleep
The pain that doesn’t switch off
The energy it takes just to look “normal”
The breakdowns that happen in silence
You’re seeing 5% of the reality.
The other 95% ?
It’s hidden — because no one makes space for it.
Before you judge someone’s pain… understand that survival often looks like “fine.”
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Some days, getting out of bed is the biggest thing I accomplish.
I’m trying to learn that it still counts.
For those of us living with chronic pain, fatigue, or invisible illness, surviving the day can take more strength than people realize.
Do you celebrate those days or beat yourself up for them? 😴
#ChronicPain #ChronicIllness #InvisibleIllness #Spoonie #Fatigue #Disability #selfcompassion
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"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
I wanted to go.
My body said no.
Now I’m home fighting the guilt on top of the pain.If you deal with chronic pain, do you push through… or stay home?
#ChronicPain #ChronicIllness #InvisibleIllness #Spoonie #SpoonieLife #ChronicPainAwareness #DisabilityAwareness
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They think it’s a vacation..
They picture beach chairs, easy money, no worries....
Reality?
It’s denial letters !
It’s endless paperwork !
The non-stop advocating for yourself while TRYING to manage health- no easy feat!
It’s appointments you can’t miss and pain you can’t escape !
It’s being treated like you’re lying just to survive !
NOBODY is “living it up” on benefits !
Full Stop !
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CW: Medication
What it’s like living in a household of spoonies. Pills, pills and more pills. 💊
#Ramblings #video #spoonie #meds #medication #chronic-illness #chronic-pain #disabled #mental-illness #invisible-illness #invisible-disability #out-of-spoons -
From @onelife_livedwell on IG:
The PACE trial shaped an entire research paradigm, but the methodology tells a more complicated story. This is what happens when lived experience and research conclusions don’t align and why how we define things matters so much. #invisibleillness #invisibleillness #spooniesupport #mecfs #longcovid @mecfs @longcovid -
But you don't look sick. Well, tell me what "sick" looks like and I'll try to get it right next time.
By Lisa
#mentalhealthhumor #funnymemes #copingwithhumor #humorheals #ymhc #mentalhealthawareness #mentalhealthmatters #invisibleillness
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Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds
Note: blue badge = UK name for disabled parking permit
Screenshot from AMMES March 2026 Newsletter
#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots -
A beautifully framed certificate acknowledging my amazing wife @CarolineG has been accepted by OBOD as a fully fledged Druid. It took her seven years while she was battling with fibromyalgia and other health issues.
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"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life
Another thoughtful post from this OT who specialises in ME/CFS & long Covid
She calls such devices "capacity extenders".
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability1/
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Another thoughtful blog post from this blogger:"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone
https://mecfs.substack.com/p/some-people-feel-validated-by-an
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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The invisible math of chronic illness: before saying yes to anything, you're calculating energy reserves, recovery time, medication timing, and whether you'll pay for it tomorrow.
It's not laziness. It's a constant equation that healthy people never have to solve.
#ChronicIllness #Spoonie #InvisibleIllness #SpoonTheory #DisabilityAwareness
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Extract from:
Somatic symptom disorder: Why your doctor doesn't believe you're really sickhttps://mecfs.substack.com/p/somatic-symptom-disorder-why-your
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Extract from:
Somatic symptom disorder: Why your doctor doesn't believe you're really sickhttps://mecfs.substack.com/p/somatic-symptom-disorder-why-your
#Psychologicalisation #chronicillness #ChronicPain #hiddenillness #invisibleillness