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The Invisible Struggle When Your Illness Doesn't Show on the Outside

“ #Comments like "but you were fine yesterday!"..hit like accusations. They force you to either defend yourself or silently swallow the hurt of not being trusted.”: buff.ly/Qwp3jiA

by @remotetherapy.space
#NEisVoid #ChronicFatigue #InvisibleIllness #disabled #support #communication #ChronicPain

Nobody Has My Condition But Me Medical researchers find my genetic mutation endlessly fascinating. But being unique isn’t a plus when you’re a patient.

"My #rheumatologist says this is typical of her female #patients, who often turn to self- #blame. In contrast, her male patients just show up and say, “Fix me.” The truth, though, was that she could not fix me.": buff.ly/1ijwuvS

via @NewYorker.com
#spoonies #ChronicIllness #RareDisease #ChronicPain

Wound Care And What To Wear After Knee Surgery (Part 5 of 6 in the knee resource series)

"I had to hire a private #ambulance for a few months, and needed two #paramedics to carry or haul me up with my legs laid as flat as possible. You can see how troublesome dresses can be in such scenarios.": buff.ly/Xe5OUGU

#AdaptiveClothing #adaptive #accessible #ChronicPain

What I Wish I Could Tell Doctors: A Chronically Ill Patient’s Perspective Introduction I never imagined I’d become fluent in medical language. I never thought I’d know the ins and outs of NHS referral systems, or that I’d learn to navigate clinics, symp…

"“Normal” test results don’t mean I’m okay. – #InvisibleIllnesses live between the lines of standard blood panels and scan reports. Please listen to my story, my #body is telling – even if the data isn’t screaming it.": buff.ly/YFjL3Hi

by crb4hk9hyf
#doctors #ChronicIllness #disability #NEisVoid

Pacing yourself is vital for Fibromyalgia Pacing yourself when you have Fibromyalgia is one of the best tools you can adopt, to learn this means fighting your natural instincts, here is my advice!

"Since I have got to grips with #pacing myself life has been..easier. I still have foul days..But they are just days. A year ago I may hv had a full week dealing with a #FlareUp now I am..more likely..to be in #recovery mode for a week.": buff.ly/EZXeLxH

by @creativefibro.bsky.social
#ChronicPain

The Silence After Survival – EDSAwareness.com This week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind.

“After 14yrs of walking #alone,
this flood of #support felt surreal
like stepping into warm water
after yrs of winter cold.
They say
“This is normal.
This is how care is meant to be.”
It still feels strange.
Beautifully strange.”: buff.ly/88SnqSr

via @cppedsa.bsky.social

The Cure for Loneliness Is Solitude Personal Perspective: Sitting with loneliness can change it from loneliness to aloneness to solitude, from negative to neutral to positive.

"When you’re #courageous with yr #suffering, it turns. It doesn’t stand still. It only does that when you refuse to look at it, and try to fix it, or Netflix it, without #feeling it..time #alone is essential to the work of #transformation.": buff.ly/ftdTf8M

via @psychologytoday.com
#lonely #human

How to Create Micro-Moments of Joy to Help You Keep Going - Tiny Buddha How to create micro moments of joy to support your nervous system, build resilience, and feel more alive in hard times.

“I remember reading this & thinking, “Why isn’t anyone talking about this?” We celebrate #grit & toughness. We talk about powering through, not giving up & being strong. But #joy requires #courage too—especially when you’re #suffering.”: buff.ly/HgseJU4

from tinybuddha
#ChronicPain

“It begs the question: Who should we #trust? Who is the ‘real’ you?” says Hershfield. “The self who came up with the #plan or the #self who exists at any given moment in time, even if that self is in the throes of #dementia?”: buff.ly/tJE5PxQ

from @knowablemag.bsky.social

The Most Important Thing I’ve Learned from Dating with Chronic Illness. (A silhouette of a couple in embrace is seen in the background, amidst a parched landscape of dry trees against a night sky in slight tints of blue and red.) www . a chronic voice .com

"It is also important to be aware of your #SelfWorth at all times – whether you’re #single or in a #relationship. Ironically, it was #ChronicIllness that forced me to hone this awareness through #acceptance.": buff.ly/H7Qrwc0

#MondayBlogs #SelfLove #spoonies #DisabledPeople #dating #LifeLessons

Gratitude Schmatitude Healing the body doesn't heal the soul

“After developing #ChronicPain, I took extra care to avoid #gratitude in all its forms..I felt justified in this view because I believed practicing gratitude would diminish my #pain in the eyes of others.”: buff.ly/YAJhBYD

By @Nataliemead.bsky.social
#migraine #migraineur

Buffer Time: The Missing Ingredient of Pacing with Chronic Illness | The Health Sessions Struggle to deal with unexpected events? Here's how you can apply buffer time to optimize your pacing routine with chronic illness.

“Another strategy to add #buffer time is to blank out 1 morning or afternoon a week in yr #schedule. That guarantees u have a few hrs to deal with #unexpected things that pop up over the week, like small repairs & finances.”: buff.ly/yL4cL9Z

By thehealthsessions
#ChronicIllness

What's it Like to be on a High Dose of Steroids? (And the First Question You Will Definitely Ask)

"Everyone around me was so focussed on the physical aspects of my #disease, that the #emotional wreckage brought about was brushed aside as unimportant. As a result, I presumed that it was part of what #puberty felt like.": buff.ly/WDmvX10

#MondayBlogs #ChronicIllness #MentalHealthMatters #spoonie

Crucial Ways to Prep for Surgery Recovery Ahead of Time My surgery recovery earlier this year was the first I’ve had in 5 years I had several months to prepare for it, which made my overall recovery easier. Unfortunately, I am a surgery pro, which is why…

"Even if you live with your #SupportSystem, relying on others for everything gets old quickly. Being able to get yourself dinner – even if that just means making a frozen meal – will help u feel more #SelfSufficient quickly.": buff.ly/WFWPhkE

by @katethealmostgreat.bsky.social
#Surgery #ChronicPain

The face scars less than the body – a new study unravels why A Stanford Medicine study in mice shows that facial wounds scar less thanks to unique cellular pathways, opening the door to improved healing after surgery or trauma.

" Scarring is more than a cosmetic problem. #Scars can interfere with normal tissue function & cause #ChronicPain, disease & even death..abt 45% of deaths in the US are due to some type of #scarring ( #fibrosis ) – usually of vital organs.": buff.ly/Zgefw9s

via @stanford.edu
#HumanBody #MedSky

Grieving the Life That I Will Never Have (Due to Chronic Illness and Disability). (A collage of four photos, featuring from top left to bottom right: close-ups of a map, a woman hurrying across a zebra-crossing, dressed in office wear, people clinking glasses of alcohol, and a mother lifting her child up in the air with a smile on her face.

"We hear.. #advice that emphasise the importance of planning for your #future. For your #retirement, for your family, for emergencies. But we can’t even #plan for tmr, what more..5 yrs? The #emergency is happening right here, right now.": buff.ly/LhF3Oig

#MondayBlogs #NEisVoid #disability #spoonie

Health-care workers risk their lives in warzones. Are we protecting them enough? Humanitarian personnel put themselves in harm’s way to help others. An international law expert explains how we can keep them safe.

“In the last 3 years, more than 1,000 #humanitarian workers have been killed while serving in #war -torn regions. Just last week, Australia joined 6 other nations in calling for more #legal protections for humanitarian personnel.”: buff.ly/xbDOA6V

from @theconversation.com

If You Could See MS – Part 2 The Horror Sequel You Can’t Unsee Part 2 of “If You Could See MS” drags you deeper into the neurological horror of living with multiple sclerosis. Raw, furious, and darkly funny—this isn’t feel-good fluff. It’s blood, spoons,...

“ #MS isn’t just some misunderstood condition that makes you “a bit tired.” It’s a chronic possession. A #neurological horror that turns your own #body into a traitor.”: buff.ly/Ggg1Ivn

by goblinbloggeruk
#ChronicIllness #ProgressiveDisease #MultipleSclerosis #disabled #NEisVoid

Why are communities pushing back against data centers? — Harvard Gazette Tech, data policy expert says concerns legitimate over rising power rates, water use, environmental issues amid mushrooming growth.

“It’s been impressive just how well #communities have organized around this, how #educated they have gotten about the topic, and how many of these projects they have been able to stop.": buff.ly/WgRTLbM

via @Harvard.edu
#DataCenters #AI #AIBoom #technology #GlobalWarming #climate

Can Disabled Travellers Book Cruises Last Minute? Finding Accessible Cabins and Cruise Deals | Disability Horizons Accessible cruise cabins are limited, but cancellations can create last-minute opportunities. Learn how disabled travellers can find accessible cruise deals.

“Once on board, [everything] remains in the same place..For many #disabled travellers, the appeal of #cruising is the ability to settle into 1 #accessible environment rather than manage new #accessibility barriers at every stop.”: buff.ly/4zW9Axh

from dhorizons
#travel

Chronic Stress, the Silent Assassin

"What makes #ChronicStress extra insidious, I believe, is its inability to be measured or calculated with precision. As #humans, we also get used to the pace after some time & begin to feel like that's 'normal'.": buff.ly/C9DClJj

#MondayBlogs #ChronicPain #StressManagement #MentalHealth #SelfCare

9 Questions to Focus on Your Hopes and Dreams It's time to assess how far from the dream your current path has taken you. It's a list of questions to help you find a sense of focus for your writing career.

"Sometimes, it's because we don't know any better, but more often than not, it's because we're afraid to reach for what we want. Somewhere between A & B, someone convinced us that our #dreams weren't possible—& we believed them.": buff.ly/YneDQzt by @JudyLMohr #LifeJourney

Why some people really struggle to lose weight more than others Thousands of genes that have an influence on weight, say experts - which means weight loss isn't a level playing field

"She estimates that there r likely to be thousands of #genes that hv an influence on #weight & that we only know in detail abt..30-40 of them. This is y the #WeightLoss drugs coming on to the market r so effective..they help to combat this.": buff.ly/veyPoaB

via BBCWorld
#nutrition #diet #obese

MS Isn’t Cancer, But It’s Its Own Kind of Killer Living with MS means living with pain no scan can explain. After a biopsy turned red patches into a nerve firestorm, I’m left battling bowel agony, brain fog, and the kind of truth no doctor’s note…

“I hold back vomit with every breath because the world tilts and the noise in my head goes white‑hot. I wish I were anywhere else. I wish I were normal. I wish for a million useless little things.”: buff.ly/aFyvUbf

by goblinbloggeruk
#tinnitus #ChronicPain #MS #disability #ChronicIllness #NEisVoid

3 Types of Chronic Pain that Sound Bearable, but are Not - Read on A Chronic Voice .com

"Simple tasks such as hailing a cab or fastening your bra question your physical #abilities & mental stamina - your status as an #adult #human being. Forget about ‘light’ exercises — you have trouble even walking to the bathroom.": buff.ly/SFplGZy

#MondayBlogs #ChronicPain #ChronicIllness #disabled

The Power of Inclusion: A Reflection on Disability The writings of Dusty Wentworth—exploring politics, social commentary, philosophy, and life with clarity, honour, and depth.

"Physical barriers are the most obvious..But there are quieter #exclusions too..It is often not malice that builds these walls but neglect. The failure to imagine another person’s #reality.": buff.ly/MpDEFUi

by Dusty1Wentworth
#awareness #DisabledPeople #InclusionMatters #society #disability

I had cancer. Did I need all the miserable comforters too? | Psyche Turning Points Sick in a London hospital, I understood the Book of Job and his rage at all the miserable comforters

"Some of these deniers tried to inflate me with stories of their friends..Others said: ‘I know you’ll be fine.'..They shook their pompoms through my #pain. Their energy felt manic compared to my own #depressive bog.": buff.ly/SeYKNNV

via @psyche.co
#cancer #disability #awareness #ChronicIllness

Baker’s Cyst: My Tale of This Painful Aspect of Psoriatic Arthritis PSORIATIC ARTHRITIS Baker's Cyst: My tale of this painful complication of Psoriatic Arthritis. My Baker's Cysts ruptured in August 2025.

"It is uncommon to have them in both #knees & to have both.. #rupture at the same time. So that..is the fluid that I was manually draining via #LymphaticDrainage from my legs when I should’ve been seeking #emergency attention.": buff.ly/O6qIOfk

by @carriekellenberger.bsky.social
#ChronicPain

“It’s in My Blood”: Shannon Giroux — Making a Better Home to Live in, Despite Multiple Sclerosis

" #MultipleSclerosis affects the brain & spinal cord & can cause permanent damage or deterioration of the #nerves. Whilst Shannon lives with #MS, her #creativity & passion for life can be seen with all the personalised touches around her #home!": buff.ly/I4IhHaG

#ChronicIllness #disability