#hiddenillness — Public Fediverse posts

New:
"How visible and hidden disabilities are treated differently in clinical practice"

From:
Non-visible disability in the medical curriculum: what medicine overlooks, patients inherit

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1701393/full

#Hiddendisabilities #invisibleillness #Invisibledisability #hiddenillness #chronicillness #MEcfs #PwME #ME #MyalgicE
@mecfs

2/
From:
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

#hiddenillness #invisibleillness
@longcovid @mecfs

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

Screenshot from AMMES March 2026 Newsletter

#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, & meaning under any circumstances"

From:
Recap: Support group: Coping with Depression & Emotional Overload
https://batemanhornecenter.org/wp-content/uploads/2026/02/20260217-Support-Group-Recap.pdf

#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders".

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability

1/

🧵
Another thoughtful blog post from this blogger:

"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone

https://mecfs.substack.com/p/some-people-feel-validated-by-an

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

1/

3/
Extract from:
Somatic symptom disorder: Why your doctor doesn't believe you're really sick

https://mecfs.substack.com/p/somatic-symptom-disorder-why-your

#chronicillness #Spoonie #hiddenillness #invisibleillness

2/
Extract from:
Somatic symptom disorder: Why your doctor doesn't believe you're really sick

https://mecfs.substack.com/p/somatic-symptom-disorder-why-your

#Psychologicalisation #chronicillness #ChronicPain #hiddenillness #invisibleillness

🧵
"Somatic symptom disorder: Why your doctor doesn't believe you're really sick: SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis"

https://mecfs.substack.com/p/somatic-symptom-disorder-why-your

I have been impressed by this blogger.

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

1/

The Emotional Toll of Chronic Illness: Naming the Invisible Grief | Grief is the New Normal

https://www.youtube.com/watch?v=pgqi2W9dmLc

From February 2026 Massachusetts ME/CFS & FM Association newsletter

https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253

Comment: I haven't watched it myself so far

#chronicillness #chroniclife #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #Fibromyalgia #Fibro #FMS #FM

"I have long Covid. Don’t call my chronic disease a ‘journey’: I would sooner call the experience a bad trip"

Screenshot from February 2026 AMMES newsletter

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

#chronicillness #LongCovid #hiddenillness #invisibleillness
#Spoonies #Spoonie #ChronicallyIll #MEcfs @mecfs @longcovid

How can we manage our wellbeing when interacting with others online?

https://www.actionforme.org.uk/resource/behind-the-screen/

"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #chronicillness @mecfs #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

"Creativity and chronic illness" (from the Chronic Living Therapy newsletter)
https://chroniclivingtherapy.com/creativity-chronic-illness/

Features:

- Ballet dancer, @anilvanderzee

- Red Tree and ME – international collaborative art project

- Jeremy Jeffs, Photography project

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

1/

I saw this 36-page booklet recommended for people with disabilities & chronic illnesses as well as older people but haven't read.

https://www.aarp.org/livable-communities/housing/info-2020/homefit-guide-download.html

Not sure whether it is mainly of use to those in the US or whether it is pretty international?

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

1/

How Invisible Chronic Illness Adds an Extra Burden to Life

https://www.psychologytoday.com/us/blog/turning-straw-into-gold/202511/how-invisible-chronic-illness-adds-an-extra-burden-to-life

She has ME/CFS herself but the article is not specific to any illness

#invisibleillness #chronicillness #ChronicPain #Spoonielife
#hiddenillness #Spoonies #Spoonie #ChronicallyIll #MEcfs
@mecfs @longcovid
#LongCovid #POTS @pots

"When I Don't Feel 'Disabled Enough' as Someone With a Chronic Illness"

https://themighty.com/topic/fibromyalgia/feeling-not-disabled-enough-chronic-illness

"How many of you who have fibromyalgia or similar #chronicillness sometimes feel like you’re judged for not being 'disabled enough?'”

#invisibleillness #Spoonie #hiddenillness #Spoonielife #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @longcovid
#LongCovid #MEcfs #
@mecfs

Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these

This was posted as a comment on my FB page today, but I'm not sure who created it originally.

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #chronicillness #hiddenillness #invisibleillness
#ChronicIllnesses #Spoonies #Spoonie #POTS @pots #Fibromyalgia #Fibro #FMS #FM

(Not ME-specific)

"Cost-of-disability payment a priority for 2026, says social protection minister"

"Dara Calleary said he wanted to see a budget proposal provided to him before the summer"

https://www.irishexaminer.com/news/politics/arid-41767685.html

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

Bateman Horne Center's "'Coffee'" with a Clinician: Pacing for Holidays and Special Events"

Recording
https://www.youtube.com/watch?v=BNZ563Uktaw

Slides
https://batemanhornecenter.org/wp-content/uploads/2025/12/Coffee-With-a-Clinician-Pacing-for-Holidays-and-Special-Events.pdf

Transcript
https://batemanhornecenter.org/wp-content/uploads/2025/12/CWC-Dec-10-Transcript-edit.pdf

I haven't watched it but slides seem sensible

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

(US) "[Federal] Circuit court rules that subjective testimony must be considered in cases with disabilities that can’t be detected by objective medical tests"

https://marylandmatters.org/2025/12/24/federal-court-says-social-security-cant-dismiss-complaints-of-fibromyalgia-sufferers/

Relevant for ME/CFS, Long Covid, etc.

Court ruling:
https://www.ca4.uscourts.gov/opinions/232259.P.pdf

@longcovid
#LongCovid @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Fibromyalgia #Fibro #chronicillness
#ChronicPain #hiddenillness #invisibleillness #POTS @pots

Years of scapegoating rhetoric & politicians casting #disabled people as “scroungers” have reinforced prejudices about the blue badge parking scheme & led to “envy & resentment” instead of equal access, according to a 4-year research project

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

#chronicillness #hiddenillness #invisibleillness #Spoonies #Hiddendisability #Hiddendisabilities @mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

Blue Badge* Myths – Busted

*a blue badge is what a disabled parking badge/permit is called in the UK

https://x.com/DRDisabilityReb/status/2003444813694116345?s=20

#Disabled #Disability #Hiddendisability #Invisibledisability #chronicillness #hiddenillness #invisibleillness #Spoonie
@mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots

Shame, (In)visibility, and Ill Feelings by @kacheston.bsky.social

https://muse.jhu.edu/article/975548

Screenshot from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #chronicillness #Fibromyalgia #hiddenillness #invisibleillness

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/

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

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

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

#chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

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

An emeritus professor Edzard Ernst who has focused on researching Complementary & Alternative Medicine takes a sceptical look at an Ear Acupressure Device that has been promoted for ME and other conditions

https://edzardernst.com/2024/01/dragons-den-contestant-gets-offer-from-all-six-dragons-for-an-ear-acupressure-device/

#scepticism #sceptic @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness