#invisibleillness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #invisibleillness, aggregated by home.social.
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Episode 20: She Wasn’t Expected to Live—But God Had Other Plans | EP 20 Heather’s Story
What does faith look like when healing doesn’t come the way you hoped? Heather was born with a congenital heart defect and wasn’t expected to live. Through multiple heart surgeries, breast cancer, chronic illness, and ongoing physical challenges, God has continued to meet her again and again. In this powerful episode, Heather shares how her struggles have deepened her faith and given her a purpose—to bring hope to others walking through chronic and invisible illness. Sometimes testimony doesn’t say, “Everything is perfect now.” Sometimes it says, “Jesus is still here.” ❤️ -
Using aids and maybe looking/acting different than others expect:
'I don't really care anymore what people think of me.'
'Well, better look silly than feel terrible.'
'I quite enjoy being weird. (..) I hope that everyone can just go out there and be their own weird self after this conversation.'
#physicaltherapy tools to reduce crashes and improve quality of life for:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
From @onelife_livedwell on IG:
Let’s talk about the unofficial evaluation that can determine belief, treatment, or accommodations. What’s being measured is legibility in the eyes of the system you’re dealing with. -
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“If this is where you are, or where someone you love is, I hope this phrase gives you a small place to stand and is a reminder that the journey has a name💛”#undiagnosed #undiagnosedillness #invisibleillness #spoonie #chronicillness
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The invisible illness tax is real, but so is the growing body of research, education, and education working to reform it.
#chronicillnesssupport #invisibleillnessawareness #invisibleillness #advocacy #spooniesupport #chronicillness @mecfs @longcovid @pots
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Somatic symptom disorder: Why your doctor doesn't believe you're really sick
https://mecfs.substack.com/p/somatic-symptom-disorder-why-your
Screenshot from July 2026 AMMES newsletter
#Psychologicalisation #chronicillness #ChronicPain #hiddenillness #invisibleillness
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Evaluation of an Invisible Illness Communication Strategy Curriculum Among Internal Medicine Interns
Screenshot from latest Science for ME weekly update
#hiddenillness #invisibleillness @mecfs @longcovid
#MEcfs #LongCovid -
Long COVID patients are told symptoms are in their head – here’s how to change the narrative
#Health #LongCOVID #MECFS #ChronicIllness #COVID19 #PostCOVID #LongHaulers #BrainHealth #NervousSystem #PatientCare #InvisibleIllness #ChronicPain #Rehabilitation
https://the-14.com/long-covid-patients-are-told-symptoms-are-in-their-head-heres-how-to-change-the-narrative/ -
My cardiologist appointment is finally here, and I'm wearing my Holter monitor! 🩺✨
Full confession: I meant to record on the way, but a lady was cleaning my hallway, my dad was already waiting outside in his car, and then he walked me all the way into the clinic! 😂
Now the waiting game begins for clear results🤞🏻
Have you ever had to wear one of these heart monitors? Let me know 👇
#cardiology #holtermonitor #healthjourney #invisibleillness #jenniesworld
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🌩️ Flare Report: Pain
Pain isn’t always visible.
It can burn, ache, throb, stab, or feel like your entire body weighs a thousand pounds. Just because others can’t see it doesn’t mean it isn’t real.
💜 If you’re hurting today, remember: You don’t have to earn your rest. Pain is reason enough.
❓What’s ONE thing you wish healthy people understood about chronic pain?
#ChronicPain #ChronicIllness #Spoonie #InvisibleIllness #FlareReport #PainAwareness #Disability #spoonielife
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🧠☁️ Flare Report: Brain Fog
Brain fog is more than being forgetful.
It’s searching for the right words, losing your train of thought, rereading the same sentence, or walking into a room and forgetting why.
For many of us with chronic illness, it’s one of the hardest invisible symptoms to explain.
💜 Be kind to yourself on the foggy days.
What’s the funniest or most frustrating brain fog moment you’ve had?
#BrainFog #FlareReport #ChronicIllness #Spoonie #InvisibleIllness #DisabilityAwareness
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One of the hardest parts of chronic illness isn’t just the fatigue.
It’s grieving the life you thought you’d have.
Today’s Funny Friday Flare Report features Chaos, who reminds us:
🐱 “Apparently surviving counts as productivity today.”
And on some days… that’s more than enough. 💜
What has chronic illness made you grieve that people don’t usually think about?
#ChronicIllness #Spoonie #InvisibleIllness #Fatigue #Grief #ChronicPain #Disability #funnyfriday
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📖 Spoonie Word of the Day
Flarecation (noun): A vacation you never wanted but your body booked anyway. 😅
No beach. No suitcase. Just fatigue, pain, brain fog, canceled plans, and hoping tomorrow is a little kinder.
💜 What’s the symptom that usually sends you on a flarecation?
#Spoonie #ChronicIllness #ChronicPain #InvisibleIllness #Flarecation #BrainFog #Fatigue #MedicalHumor #LivinInAFlare
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🌩️ Today’s Flare Report: Fatigue
Not all fatigue is solved by sleep.
Sometimes it’s waking up exhausted.
Sometimes it’s choosing between a shower and making dinner.
Sometimes surviving the day is the accomplishment.💜 Pain: Moderate
🌬️ Energy: Low
🧠 Brain Fog: High
🥄 Spoon Forecast: LimitedIf today’s forecast matches yours, be gentle with yourself.
How’s your forecast today? 💜
#ChronicIllness #ChronicPain #Fatigue #BrainFog #Spoonie #InvisibleIllness #Disability #ChronicFatigue
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💔 Losing your career because of chronic illness is a grief many people don’t talk about.
It’s not just the job.
It’s the independence, purpose, routine, and future you imagined.
If you’ve had to leave a career because of your health, please know you’re not alone.
Your worth is not defined by a job title. You are still valuable, capable, and worthy. 💜
What career or job do you miss the most?
#ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessCommunity l
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🏅 Former Athlete. Current Professional Napper. 😴
Chronic illness has a funny way of changing your goals.
I used to celebrate being busy. Now I celebrate listening to my body before it forces me to slow down.
And honestly? Some naps deserve Olympic recognition. 😂💜
What’s your chronic illness superpower?
#ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #disabilityhumor
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🦩 Daily Reminder from Flare-a
Check in with your body before making plans.
Not every day comes with the same energy, symptoms, or limitations. Before you commit, take a moment to ask yourself what your body can realistically handle today.
Listening to your body isn’t weakness. It’s wisdom. 💗
What is your body trying to tell you today?
#ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #SelfCare #EnergyManagement #LivinInAFlare
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Do you ever miss your old life?
Not because you’re ungrateful.
But because chronic illness changed things.
The independence.
The freedom.
The ability to make plans without calculating recovery time.Missing your old life doesn’t mean you’re giving up. It means you’re grieving a loss.
And that’s okay.
💜 What do you miss most about your old life?
#ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #disability
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💜 What do you miss most about your life before chronic illness?
Sometimes it’s not the big things.
It’s running errands without exhaustion.
Taking a shower without needing a recovery day.
Making plans without wondering if your body will cooperate.
Being spontaneous.
Feeling like yourself.
Living with chronic illness means grieving parts of life that healthy people rarely think about.
💜 What do you miss most?
#ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #disability
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I miss making plans without calculating recovery time.
With chronic illness, one fun day can turn into several recovery days.
It’s the prep.
The pacing.
The symptoms.
The crash afterward.
The guilt if you cancel.
The recovery nobody sees.Chronic illness math is brutal.
What’s something you miss doing without having to “pay for it” later?
#ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #disability
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Medication check from Medi 💊
Medi says: take your medications.
No shame if you forgot. No guilt if you need reminders. Chronic illness routines can be exhausting, and reminders help.
Your health matters.
Go take them if you need to.Daily Reminder | Livin’ In A Flare
#Medi
#TinyAndFriends
#MedicationReminder
#ChronicIllness
#Spoonie
#SpoonieLife
#InvisibleIllness
#Disability
#SelfCareReminder
#LivinInAFlare -
💜 Tiny’s Daily Reminder 💜
Drink some water.
A gentle reminder from one spoonie to another that your body deserves care today.
How much water have you had so far?
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What’s something healthy people take for granted that you think about every day?
For me, it’s the tiny everyday things that aren’t tiny anymore.
Showering.
Leaving the house.
Standing in line.
Making plans.
Doing one “normal” thing without calculating the recovery cost.Chronic illness changes the way you move through the world.
What’s one thing you wish people understood?
#ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #DisabledLife #ChronicIllnessAwareness #Pacing
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Showing up after chronic illness doesn’t always look productive.
Sometimes it looks like resting.
Sometimes it looks like asking for help.
Sometimes it looks like simply making it through the day.
And every version counts.
If you’re having a hard flare day today, this is your reminder:
❤️ Rest counts.
❤️ Healing counts.
❤️ Surviving counts.What does showing up look like for you today?
#ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessAwareness #SpoonieLife
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Your value is not measured by your productivity.
Not by how many errands you ran.
Not by how clean your house is.
Not by how much you accomplished today.Some days surviving is the accomplishment.
And if that's where you are today, I'm proud of you. ❤️
#ChronicIllness #ChronicPain #InvisibleIllness #Spoonie #SelfWorth
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Can we retire the phrase "You don't look sick"?
Many people living with chronic illness become experts at appearing okay.
What you don't see is the pain, exhaustion, appointments, medications, and recovery happening behind the scenes.
Not everything difficult is visible. 💜
#ChronicIllness #InvisibleIllness #DisabilityAwareness #ChronicPain
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare