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

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

Sometimes Surviving is Enough

After a difficult few days, I’m trying to remember that sometimes surviving is enough.

And despite everything, I’m still here.

https://thebionicbear.uk/2026/06/11/sometimes-surviving-is-enough/

#MentalHealth #Anxiety #Depression #InvisibleIllness #SelfCare #Over50 #Trauma #LGBTQ

Sometimes Surviving Is Enough

Anxiety doesn’t always feel like sadness. Sometimes it feels like fear. Fear of failure, fear of letting people down and fear of losing everything. After a difficult couple of days, I’m…

ᗷIOᑎIᑕᗷEᗩᖇᑌK
Recovery Isn’t Linear. Bloody Inconvenient, Isn’t It?

Some days recovery feels hopeful. Other days it feels frustrating, exhausting and painfully slow. Today’s Operation Restoration update is an honest reminder that rest isn’t failure, low days aren’t…

ᗷIOᑎIᑕᗷEᗩᖇᑌK

"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

#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare

Looking Back: 30 Years of Shame and Finally Understanding My Experience

I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.

Doctors kept telling me it was all in my head.

They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.

Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.

Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.

So I started doubting myself.

I felt weak.
I felt crazy.
I carried a lot of shame for something I couldn’t control.

The fatigue and exhaustion that comes with this illness is crushing.

It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.

My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:

The problem isn’t simply how much I sleep.

It’s that my dysautonomia prevents the sleep from being restorative.

In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.

Only recently have I finally understood what’s really happening.

What I have is dysautonomia.

My autonomic nervous system doesn’t regulate properly anymore.

That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.

ME/CFS always felt like an incomplete label to me.

Yes, I crash after exertion.
Yes, sleep doesn’t fix it.
Yes, my body has never functioned the way people expect it to.

But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.

The only thing that actually helps is pacing — staying within my energy envelope.

I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.

After 30 years, I’ve finally stopped blaming myself.

That alone has been healing.

I’m sharing this journal entry in case it gives someone else a little more language for their own experience.

And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.

Our energy is extremely limited.

We have to be very careful to avoid crashes.

Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.

Sometimes understanding does not cure the body.

But it can begin to release the shame.

And after so many years of being misunderstood, that matters.

#30YearsOfIllness #AnxietyAndChronicIllness #AutonomicDysfunction #AutonomicNervousSystem #brainFog #chronicFatigue #chronicFatigueSyndrome #chronicIllness #ChronicIllnessAndShame #ChronicIllnessAwareness #ChronicIllnessBlogger #chronicIllnessJourney #chronicIllnessSupport #ChronicIllnessValidation #CrashPrevention #DepressionAndChronicIllness #disability #DisabledLife #DoctorVisits #Dysautonomia #DysautonomiaAwareness #energyEnvelope #Exhaustion #Fatigue #HealingShame #health #HealthJournal #insomnia #InvisibleDisability #invisibleIllness #life #LifeWithDysautonomia #ListeningToTheBody #livingWithChronicIllness #livingWithMECFS #LongTermIllness #MECFS #MECFSAwareness #MedicalGaslighting #mentalHealth #MigraineWarningSigns #MyalgicEncephalomyelitis #NervousSystemDysfunction #nervousSystemRegulation #NonRestorativeSleep #OrthostaticIntolerance #pacing #pacingWithMECFS #patientAdvocacy #PEM #postExertionalMalaise #postViralIllness #rest #RestorativeRest #selfCompassion #ShameAndIllness #Spoonie #SpoonieLife #symptomTracking #tinnitus #UnderstandingChronicIllness #wellness #writing

World IBD Day

Many people living with IBD manage symptoms others never see.

Crohn’s disease and ulcerative colitis can affect daily life through fatigue, pain, unpredictability, and stress, even when someone appears completely well externally.

Insights shared through My Patient Advice often highlight how awareness and supportive communication help people feel less isolated while managing chronic conditions.

#WorldIBDDay #IBDawareness #CrohnsDisease #UlcerativeColitis #InvisibleIllness

ICYMI: From the AOF Studio New from the Studio: My Lesions Are Real. Your “Hallucinations” Are Just Bad Maths https://www.artoffaceless.com/my-lesions-are-real-your-hallucinations/?utm_source=dlvr.it&utm_medium=mastodon #MultipleSclerosis #SPMS #ChronicIllness #InvisibleIllness #MSWarrior