#invisible-illness — Public Fediverse posts

I’m Better. I’m Not Okay Yet.

https://perfectlyimperfectlife.blog/2026/10/04/im-better-im-not-okay-yet/

In case of interest: “How do you deal with negative comments on social media” - SocialHealthNetwork (for health/illness advocates and similar)

https://socialhealthnetwork.com/forums/how-do-you-deal-with-negative-comments-on-social-media

#chronicillness #invisibleillness #spoonie

PCOS Looks Different For Everyone—6 Women Share Their Stories

Age of first period: 14 Age of diagnosis: 40 “I was 15 and I bled for like a…
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Health #hormones #InvisibleIllness #Metabolism #pelvichealth
https://www.newsbeep.com/us/867069/

“I look fine, but dealing with chronic illness is my full-time job” (Pittsburgh's Public Source)

https://www.publicsource.org/pots-long-covid-navigating-invisible-illnesses/

First person account about coping with chronic illness triggered by COVID infection.

#LongCovid #invisibleillness #hiddenillness #chronicillness @longcovid

"I look fine, but dealing with chronic illness is my full-time job"

https://www.publicsource.org/pots-long-covid-navigating-invisible-illnesses/

"My illnesses don’t show up on lab tests, nor do they affect my appearance. Some people think this makes them less real, but a few strong supporters keep me going."

@mecfs @longcovid

#LongCovid #MEcfs #POTS #ChronicIllness #InvisibleIllness #Disabiliity

Polly Patterson - Supporting Clients Through Medical Gaslighting

https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

2/
“Jenny's invisible chronic illness has negatively impacted her life for almost a decade... As her next doctor's appointment draws near, painful memories resurface, and the depth of the injustice she has endured becomes clear."

#invisibleillness #chronicallyill #chronicpain #undiagnosed

@mecfs @pots @longcovid

Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju

*just create a login & scroll to see Warrior Short Film until midnight Sun 13

As someone who took 5+ years to get diagnosed, sadly I can relate

#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

Had my 2-yearly opticians appointment. My /physical/ eyes have only slightly changed.

But it seems my #Fibromyalgia is once again the main thing affecting my vision.

Then I need lighter glasses as my current ones hit too many pressure points on my head, plus two on my nose, exacerbating my head pain.

It's one of those reminders that Fibro is an #InvisibleIllness because my eyes are /healthy/ but they're stopped from working properly due to pain.

Episode 20: She Wasn’t Expected to Live—But God Had Other Plans | EP 20 Heather’s Story

https://gemsofknowledge.com/2026/08/17/episode-20-she-wasnt-expected-to-live-but-god-had-other-plans-ep-20-heathers-story/

Post 1/3
💔 Living with V1 Trigeminal Neuralgia – the rarest & most severe form.
Only 1% of TN cases affect the first branch of the trigeminal nerve.
My diagnosis: therapy-resistant. No meds or surgery helped long-term.

⚡ The pain strikes without warning:
Electric shocks over my eye/temple – minutes to hours.
My triggers: washing hair, touching my forehead, wind, heat/cold.
👉 Brushing teeth doesn’t trigger pain (yet!).
#ChronicPain #InvisibleIllness #V1TrigeminalNeuralgia #TherapyResistantPain

#chronicillness
#disability

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:

https://madevisible.podbean.com/e/38-pacing-is-power-pots-pem-eds-mcas-strategies-with-dr-clayton-powers/

#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.

#mecfs #fibromyalgia #invisibleillness #pwme #cfs @mecfs

4/
“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

3/

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

Share your story below. Let’s remind each other we’re not failing — we’re enduring.

#ChronicFatigue #InvisibleIllness #FinancialStruggle #ChronicIllness #MentalHealthMatters

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

Evaluation of an Invisible Illness Communication Strategy Curriculum Among Internal Medicine Interns

https://cureus.com/articles/499688-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

🌩️ 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

🧠☁️ 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

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

📖 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

🌩️ 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: Limited

If today’s forecast matches yours, be gentle with yourself.

How’s your forecast today? 💜

#ChronicIllness #ChronicPain #Fatigue #BrainFog #Spoonie #InvisibleIllness #Disability #ChronicFatigue

💔 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

🏅 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

🦩 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

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

💜 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

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

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

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

Often mistaken for stress, this hidden neurological disorder is affecting more young Indians https://english.mathrubhumi.com/lifestyle/health/multiple-sclerosis-symptoms-diagnosis-india-b8gur37p?utm_source=dlvr.it&utm_medium=mastodon #MultipleSclerosis #MSAwareness #Neurology #InvisibleIllness