Lmst

See post #2 for a vaguely related comment from me on orthostatic intolerance

#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid

1/

When my chronically ill friends and I finally meet in person.

Image of lots of women in white gowns lying down on marble slabs at a party or something similar

#mecfs @mecfs #longcovid @longcovid #pots @pots #chronicillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

The Unseen Holiday Energy Drainers When Living With Chronic Illnesses @AwarenessforPOTSies Sensory overload Waiting in long lines Preparing meals Traveling to gatherings Sitting for long periods of time Managing invisible symptoms Triggering conversations Reminders of losses and grief Temperature fluctuations

On International Day of #People with #Disabilities, please note some disabilities are #invisible

#invisibleillness #disabled #disabledpeople #DisabilityRights #DisabilityRightsAreHumanRights
#IDPD #IDPD2025 #IDPD25 #IDPWD #IDPWD25 #IDPWD2025 #Disability
@mecfs @longcovid @pots
#LongCovid #MEcfs #CFS #PwME #hiddenillness #chronicillness #Invisibledisability

5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not.

Text:
some disabilities look like this

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

Chronic illness awareness Dear Santa, This Christmas I would like a doctor that understands my Chronic Illness Image of Santa

Opinion piece on the word "journey" as a problematic euphemism for chronic illness.

"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

https://www.statnews.com/2025/11/25/chronic-disease-journey-long-covid/

Screenshot from latest Science for ME weekly update

#LongCovid @longcovid #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

STATNews I have long Covid. Don't call my chronic disease a 'journey'
Opinion piece by professor emeritus Peter Swensson on the word "journey" as a problematic euphemism for chronic illness.
"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

"Medical Gaslighting"

https://www.youtube.com/watch?v=Kwp_CI7ZgLI

A light-hearted 3-minute song with a serious message, with which many may sadly be able to relate

#MedicalGaslighting #chronicillness #hiddenillness
#invisibleillness #Gaslighting #ChronicallyIll #ChronicPain @mecfs
#MEcfs @longcovid
#LongCovid #POTS @pots

Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies

https://pubmed.ncbi.nlm.nih.gov/40330647/

Screenshot from November AMMES newsletter

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Photo of Sigmund Freud

Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies
Accurate diagnosis requires clearly defined signs and symptoms consistent with established diagnostic criteria. A comprehensive clinical examination, including medical history, systems review, psychiatric assessment, and clinical judgment, is more reliable than relying solely on diagnostic tests. The absence of diagnostic findings should not automatically imply a psychiatric condition. Instead, the diagnosis of psychosomatic conditions requires a psychodynamic explanation, not exclusion due to the inability to identify another cause. Furthermore, the presence of a psychiatric diagnosis does not preclude the possibility of coexisting or causative somatic conditions.
Read more here>>

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
#Disabled
#Disability

compassionatereminders Follow
I hate how people will hold you to higher standards as a disabled person than they would if you were abled. I mean literally no one will expect your average abled person to exercise every day and give up alcohol and only eat vegetables, but as soon as you got a chronic illness or a mental disorder suddenly everyone is holding you to health standards literally no one else is expected to actually meet- and if you don't do xyz, then they will insist that's why you're ill. Even though THEY aren't doing it either
Bendy Bunny

#mecfs #longcovid #pots @mecfs @longcovid @pots #chronicillness
#chroniclife #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies #Spoonie #ChronicallyIll

3 photos of a man and woman in a car Photo #1: Man: Ready to go shopping? Photo #2: Woman: Yeah, I'm wearing my compression socks, I have my neck fan, my bottle of electrolytes and my foldable stool. What are we buying again? Photo #3: Man looks shocked

I saw this posted to a private FB group but I'm not sure who the creator was?

Hashtags:
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots

SPIRIT
The Gaslighting
Doctor
Includes:
-Prescription for anxiety medication
-Extra large ego
-Close mindedness
Empathy not included.
ADULT
Size Costume
ONE SIZE FITS MOST

Find New Meaning
https://cfsselfhelp.org/library/10-find-new-meaning

"In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us"

A little bit of what might be called psychobabble near the start but interesting topic

@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Key 10: Find New Meaning
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(From the series Ten Keys to Successful Coping: 2001)

By Bruce Campbell

One of the greatest challenges of chronic illness is coming to terms with grief. While grief is usually associated with the death of a loved one, it can occur after any loss. And chronic illness brings with it many serious losses.

We may be forced to give up our job, may lose friends and feel abandoned by family, and may experience loss of control over our bodies and our lives. In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us.

2/

"Akin to the ideal victim, the ideal claimant of hidden disability must navigate a system built by (and from the perspective of) those with specific preconceived notions of what it means to be a person with a disability and to present as one."

#MEcfs #invisibleillness #hiddenillness #spoonie @mecfs #hiddendisability #invisibledisabilityawareness #invisibledisability #invisibledisabilities

Seeing is Believing:Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s & Quebec’s Social Benefits Tribunals

https://digitalcommons.schulichlaw.dal.ca/dlj/vol48/iss2/1/

"advocating for a shift away from entrenched stereotypes towards a more inclusive & equitable system"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #chronicillness
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals
Authors
Pascale Malenfant, McGill University Faculty of Law

Keywords
disability, hidden disability, health law, social benefits, administrative law, ideal victim

Abstract
The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system

(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & #longCOVID patients must qualify as 'medically frail'" (October 7 2025) by Laurie Jones

https://www.medpagetoday.com/opinion/second-opinions/117839

3 min read

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #POTS @pots #postcovid19 #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#chronicillness #invisibleillness #hiddenillness #Spoonie #spoonies

But you don't look sick?! My illness is commonly referred to as an invisible illness. Did you know that 96% of people with a chronic illness have an invisible condition, and that 74% of disabled individuals do not use visible mobility aids like wheelchairs? Please don't judge my health based on my appearance. CHRONICALLY RISING

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD"

From:
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine

https://www.ochsnerjournal.org/content/25/3/152

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#LongCovid #PASC #POTS @pots @longcovid

Table 2. Never-WordsforPatientsWithInvisibleIllnesses– Liza Di LeoThomas,MD Di Leo Thomas, L Never-WordPhrase Alternative Explanation “But you look fine.” “At least you don’t look sick.” “Great news! All your tests are negative!” “You can’t believe everything you see online. Let’s not diagnose you based on a TikTok influencer.” “At least you’re not bedbound, wheelchair bound, don’t have cancer, et cetera, et cetera, et cetera….” “Wedon’t knowmuchaboutthisillness. There’s nothing I can do for you.” “It must be frustrating to feel so awful.” “The goodnewsiswehaveruledout (A, B, C) by doing these tests. But I believe there is something wrong, and I will work with you to figure it out.” “Thank you for taking such an interest in your illness and advocating for yourself. Let’s talk about what you saw online.” “It sounds like you are suffering with this quite a bit. Can you explain how it has affected your quality of life?” “I realize the research on Long COVID is slow to come, andIcan’t imagine how frustrating that is for you. Let’s see whatwecandorightnowtotreat someofyoursymptomsandimprove your quality of life.” Telling patients they look fine may make themfeel like you are doubting their illness, even if you are not. Somepatients maynotfeel like it is great newsthat test after test is negative whentheyknowsomethingis absolutely wrong with them. Online communities have become ahuge source of support for patients with LongCOVIDandotherinvisible illnesses.

I thought this FB post was interesting. I know women have cut their hair short because of the maintenance; this might be an option for some.

https://www.facebook.com/permalink.php?story_fbid=pfbid0jcJB4AmxUVjMijJruwNeENmqoNGb4hVsED7vZV9R4f2Xd6yMMyh3NhWXEWiRsU2ql&id=100094883050283

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

It’s All About M.E.
otrSoesdnp249al7718h2g0727uuf785032hc858m410ic7hgfmhh933aa0a ·
🔔 I HAVE NEWS 🗞️
I’ve been to an appointment today with a hair specialist who was highly recommended by some other MEEPS.
I’m getting a wig!
I can’t describe how much it hurts to lift my arms up to wash my hair now. I really hate my hair. It’s always been super thick and frizzy. Because of the pain in my forearms I cant use a hairdryer, straighteners or curly tongs etc. That’s why my hair is now really short.
It’s going to be a bespoke wig, made with real hair. I go to collect it in November.
Now I’ve got to decide if I shave mine completely off or just have it cut even shorter. The lady I saw today said that’s up to me. I can keep my hair as it is now and just wear the wig occasionally or wear it every day.
And it last 2-3 years.
I’m quite excited 😆
First picture below ⬇️ is of my hair currently.
Second picture below ⬇️ is of roughly what hairstyle my wig is going to be. It’s a style I had about three years ago.
#MyalgicEncephalomyelitis #MyalgicE #MECFS #SavingEnergy #PostViral #postexertionalmalaise #nocure #chronicillness #mecfsawareness #hiddendisability #chronicpain #pwME #energysaving #MEAwareness #wigs #wigstyling #newhairstyle #excited #exhausted #lethargic #fatigue #fibromyalgiaawareness #fibromyalgia

ME/FM Society of BC Article: When the Heat Hits: Managing Flares and Symptom Spikes

https://www.mefm.bc.ca/post/when-the-heat-hits-managing-flares-and-symptom-spikes

Screenshot from the Massachusetts ME/CFS & FM Association August Newsletter

@chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Summer Article Spotlight

ME/FM Society of BC Article: When the Heat Hits: Managing Flares and Symptom Spikes

Heat doesn't just make you uncomfortable when you're living with chronic illness - it can trigger significant symptom flares that feel overwhelming and unpredictable. Understanding why this happens and having a plan for managing heat-triggered symptoms can be the difference between a challenging day and a medical emergency.

Read the article.

Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd

Image is screenshot from AMMES July newsletter

#ChronicallyIll #chronicillness #ChronicPain #Spoonie #hiddenillness #invisibleillness @chronicillness
@spoonies
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #IBS @ibs #dysautonomia @dysautonomia #chronicpain @chronicpain @longcovid
#LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Image of a doctor with their head in the sand

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
As a young child in the 1980s, Jiwa Farrell earned the moniker “Little Apple Cheeks” because her face was always so “cute and pink.” But by the time she was 6 years old, she had already begun recognizing that something else distinguished her from other kids besides her bright pink complexion.

“I had flu-like symptoms all throughout my childhood and always felt very fatigued,” Farrell told Medscape Medical News. “My muscles ached, my joints ached, and I remember thinking as a kid to myself, ‘If I feel this way and other people don’t feel this way, what’s wrong with me?’”
Read more here>>

Regrettably, ‘medical gaslighting’ is experienced by many people with ME/CFS. An article published in Medscape looked at the reasons behind medical gaslighting, and provided tips to help health professionals avoid it.

#hiddenillness

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