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Tom Kindlontomkindlon@disabled.social
2025-06-13

"The doctors are not OK"
mecfs.substack.com/p/the-docto

Blogpost arguing that doctors may not be willing to admit in a consultation they don't understand a patient's condition/symptoms/etc & instead not treat them well (e.g. gaslighting them) because of the way they themselves were trained

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

The doctors are not OK. Shame, medical training, gaslighting, and cycles of abuse. K. Johnstone Jun 03, 2025 A few days ago I listened to a wonderful podcast, Long Covid MD podcast #50: Ask The Patient - Why Medicine Still Doesn't Listen, with Dr Zed Zha. In it, Dr Zha told a story about her time as a medical student working in a hospital. A senior doctor asked a question and the student replied honestly: "I don't know". The senior doctor responded by humiliating the student, and later wrote in the student’s assessment that she was not fit to work in that particular area of medicine. Dr Zha recalled feeling intensely ashamed in that moment. The feelings of being shamed were deeply upsetting, even traumatic, and it seems that this experience of being shamed was a common one in medical training. It was even noted that medical training is based on shame.
Tom Kindlontomkindlon@disabled.social
2025-06-08

🧵
Medscape (widely read by health professionals):

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

medscape.com/viewarticle/sympt
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/

Medscape Medical News > Features ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms Tara Haelle June 03, 2025
Tom Kindlontomkindlon@disabled.social
2025-06-07

I haven't read the book but the blog post is interesting enough itself

meglobalchronicle.wordpress.co

"It is about my experiences and the emotional journey of finding hope and courage whilst living with severe chronic illness."

Hashtags:
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME

Cover for poetry book with this text: THE WORDS THAT SAVED ME A POETRY COLLECTION SARAH MOZER
Tom Kindlontomkindlon@disabled.social
2025-06-07

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds

eurekalert.org/news-releases/1

Image is a screenshot from June 2025 AMMES e-newsletter

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

A photo of somebody in nature with their head down with this text: Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services. Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds
Tom Kindlontomkindlon@disabled.social
2025-06-04

Going to the Doctor When You Have a Chronic Illness

Hashtags:
@longcovid
#LongCovid
#chronicillness #ChronicallyIll #hiddenillness
#invisibleillness @chronicillness
@spoonies
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #IBS @ibs #PosturalOrthostaticTachycardiaSyndrome #POTS @pots @mecfs
#MEcfs

GOING TO THE DOCTOR WHEN YOU HAVE A CHRONIC ILLNESS What people think it's like ---------- pie chart showing: Go to appointment Get diagnosed Receive treatment and support Heal your body and get better What it's actually like --------- pie chart showing: Waiting months for an appointment Multiple/ongoing appointments Being left untreated Treatments being ineffective and/or dealing with side effects Worsening and/or new symptoms Dealing with Medical gaslighting @flexiblegonewrong
Tom Kindlontomkindlon@disabled.social
2025-06-03

From ME Research UK:

Symptom invalidation (also known as medical gaslighting) may lead to diagnostic delays for people with complex chronic illnesses like #MECFS finds a study published in the journal "American Psychological Association". Read more: bit.ly/451riym

#chronicillness #invisibleillness @chronicillness @spoonies #spoonies #spoonie @mecfs @fibromyalgia #fibromyalgia #fibro #longcovid @longcovid #hiddenillness @pots #pots

`Symptom invalidation' by health professionals may lead to delays in diagnosis. Symptom invalidation - medical gaslighting -occurs when a medical professional invalidates a patients symptoms or experiences. Research has shown for people with complex chronic illnesses like ME/CFS this may lead to: Self- Shame and doubt guilt Negative self-esteem Depression Loss of Healthcare trust burn out Feeling let down ) Healthcare related anxiety or trauma Under-reporting of Avoidance of symptoms healthcare Diagnostic delays Bontempo et. al., American Psychological Association (2025) RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942
Tom Kindlontomkindlon@disabled.social
2025-05-02

"'Twirl With Me, Mama!' by Melissa Beardall & Rebecca Nichols is a moving children’s book that shines a compassionate light on families living with #chronicillness ."

hazymaybooks.com/about-the-boo

See next post for more information on this book

@chronicillness
@spoonies #parenting #chroniclife #ChronicPain #Spoonielife
#hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots

1/

Drawing of a young girl using a stethoscope on her mother who is in bed. Has the following text: "Mama says she sick. She doesn't look sick to me. She isn't coughing or sneezing like I do when I'm sick. "You need to go to the doctor so you can get better," I say. But mama isn't getting better.
Tom Kindlontomkindlon@disabled.social
2025-05-02

Recap of professionally-facilitated support group "Surviving Invalidating Relationships & Experiences"

batemanhornecenter.org/wp-cont

"by becoming sick with a #chronicillness we become a minority...based on the prevalence rate of these conditions"

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

Bateman Horne Center logo "Support Group: Surviving Invalidating Relationships and Experiences March 11, 2025 "
Tom Kindlontomkindlon@disabled.social
2025-04-19

Blogpost giving some tips on how to maximise the usefulness of appointments with doctors.

carermentor.com/p/how-to-close

#DoctorPatientRelationship @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#1 'How to close patient-doctor disconnects.' Building our language/questions to feel like we've done our best to advocate for ourselves AND improve our chances of being heard in a medical consultation. Victoria Mar 13, 2025
Tom Kindlontomkindlon@disabled.social
2025-04-16

I found this blog post interesting.

The research found 3 themes relating to loneliness in chronic illness.

It then mentions a writing exercise one can do to analyse these in your own situation.

psychologytoday.com/ie/blog/ch

#chronicillness #chroniclife #Spoonielife #hiddenillness #invisibleillness #Spoonies @chronicillness
@spoonies
@disability
@longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #dysautonomia @dysautonomia @mecfs
#MEcfs #CFS #PwME

1/

Psychology Today logo Katie Willard Virant MSW, JD, LCSW Katie Willard Virant MSW, JD, LCSW Chronically Me Chronic Illness The Link Between Loneliness and Chronic Illness A recent study explores the intersection between loneliness and chronic illness. Posted April 15, 2025 Reviewed by Margaret Foley Share on FacebookShare Share on TwitterTweet Share on BlueskyShare on Bluesky Share on LinkedInShare Share via EmailEmail Key points Heightened loneliness is linked with chronic illness. A recent study identifies three themes related to loneliness and chronic illness. Thinking about these themes in our own lives can help us identify how loneliness affects us.
Tom Kindlontomkindlon@disabled.social
2025-04-15

An example of the thoughtless or insensitive comments people with chronic illnesses can sometimes hear

From a blog post by an Irish woman with ME who has become a published writer
solongasicanbreathe.wordpress.

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

During this period of change an ex-colleague visited with their young child and as they were leaving, my visitor, having noticed piles of crumbs on my kitchen floor from her child, exclaimed, “Cleaning up after us will give you something to do.” As all moderate ME patients know, there’s plenty we would love to do in a given day. Our Wishlist’s are endless, however, our energy never matches our plans. And cleaning up after a stranger certainly isn’t something any of us want or expect to have to use our limited energy on.
Tom Kindlontomkindlon@disabled.social
2025-04-13

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

New doctor: can you give me a brief description of your medical history? Me: Photo of hundreds of computer wires in a tangle
Tom Kindlontomkindlon@disabled.social
2025-04-11

"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

thesicktimes.org/2024/11/05/we

Image is from April 2025 AMMES Newsletter

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

We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride "Those of us who are so severely disabled by ME and Long COVID that we are rarely able to leave our houses — or even our beds — suffer from an invisibility so total, most people are completely unaware of our existence. We may not have strength in our bodies, but we certainly have strength in numbers… We don’t have to be passive, when we are this massive"
Tom Kindlontomkindlon@disabled.social
2025-04-11

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"

Links:
cards2warriors.org/
cards2warriors.org/happy-mail

Image from Institute for Neuro-Immune Medicine e-bulletin

#chronicillness @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Chronic Illness Support Have you heard of Cards2Warriors? We want to highlight the special work this nonprofit does for those affected by rare or long-term illnesses —including patients, caregivers, siblings, and medical professionals. Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those who need encouragement and cheer. It doesn't matter which of the 7,000+ rare or long-term illnesses you've been diagnosed with —Cards2Warriors welcomes YOU and wants to shower you with some snail mail support! Open to warriors worldwide, with an option for digital cards. Learn more and sign-up here.
Tom Kindlontomkindlon@disabled.social
2025-03-20

5/

“Clinicians might say to a person with a hidden illness, “You don’t look sick.” We explain that a patient can feel very sick despite looking healthy. Instead, we simply recommend refraining from commenting on a person’s appearance.”

#hiddenillness #invisibleillness
@spoonies @mecfs @longcovid @chronicillness

Tom Kindlontomkindlon@disabled.social
2025-03-12

(US) Telehealth Update

Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
massmecfs.org/newsletters/919-

@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@longcovid #LongCovid #MEcfs
@mecfs

Telehealth Update There has been some confusing media reporting of Medicare coverage for telehealth in the last few weeks. Here's a quick explainer. During the pandemic, Congress expanded telehealth services covered by Medicare. This benefit has been important for those with ME/CFS and other debilitating illnesses, allowing them to see their physicians without expending valuable energy or risking infection. This expanded coverage was a temporary measure, set to expire at the end of 2024. There was significant bipartisan support to extend this coverage for another two years in the next budget, but because that budget bill failed, and the country is operating under a short-term stop-gap funding bill, Medicare coverage for telehealth is set to expire on March 31st. With current bipartisan support, another temporary extension is likely under whatever budget measures lawmakers agree to this month. The hope is that Medicare coverage of telehealth will be made permanent. If this coverage is important to you, tell your elected representatives. See the links in the Advocacy section to find how to contact your Congressional representative.
Tom Kindlontomkindlon@disabled.social
2025-03-06

11/

“We need more clinicians to understand how a misdiagnosis of this sort can result in long-standing mental and emotional harm and in a disastrous loss of trust in doctors.”

#ChronicDisease #Hiddenillness
@chronicillness @spoonies @lupus @mecfs @fibromyalgia #chronicillness #mecfs #longcovid #invisibleillness

Tom Kindlontomkindlon@disabled.social
2025-03-05

🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

eurekalert.org/news-releases/1

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
1/

News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
Tom Kindlontomkindlon@disabled.social
2025-02-28

February 18, Support Group on When Things Get Tough – Managing Guilt and Shame with #chronicillness
Recap

batemanhornecenter.org/wp-cont

@chronicillness
@spoonies
#neisvoid
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@longcovid
#LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Migraine @migrainechatgroup @migrainechat @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Bateman Horne Center February 18, Support Group on When Things Get Tough – Managing Guilt and Shame with Chronic Illness.
Tom Kindlontomkindlon@disabled.social
2025-02-28

Support Group Recap: Self-Compassion Amidst Chronic Illness February 11, 2025
batemanhornecenter.org/wp-cont

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@longcovid
#LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Migraine #migraines @migrainechatgroup @migrainechat @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Bateman Horne Center logo Support Group Recap: Self-Compassion Amidst Chronic Illness February 11, 2025

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