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.
#chronicillness #chroniclife #Spoonielife #hiddenillness #invisibleillness #Spoonies @chronicillness
@spoonies
@disability
@longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #dysautonomia @dysautonomia @mecfs
#MEcfs #CFS #PwME
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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
https://solongasicanbreathe.wordpress.com/2025/04/14/walking-ambling-stumbling/
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@chronicillness
@spoonies
@disability
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"
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
"New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases" by @david
Image is from latest Science for ME weekly update
#chronicillness #invisibleillness
@chronicillness
@spoonies
@mecfs
#MEcfs
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
(US) Telehealth Update
Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
https://massmecfs.org/newsletters/919-2025-03-march-newsletter
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@longcovid #LongCovid #MEcfs
@mecfs
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
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"
https://www.eurekalert.org/news-releases/1074887
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
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2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
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Table 1. Never-words, their impact, and suggested alternatives
from
Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders
https://www.mdpi.com/1660-4601/22/2/275
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
2/
Table 1. Never-words, their impact, and suggested alternatives
from
Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders
https://www.mdpi.com/1660-4601/22/2/275
#LongCovid #MEcfs @mecfs @longcovid @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
Source: my_chronicpain_life on Insta
#invisibleillness #invisibledisability #chronicillness #autoimmune #chronicallyill
Proof-reading done, it's meds, hot choc and sleep time. Now it's nearly 5:30am. I have no idea when I'll resurface or what state I'll be in when I do.
Cya later at some point. Thanks for humouring me by letting my ramble on about my random life.
G'night // #StaySafe // #BeKind
(PS: "Too often, so long as the body appears to be intact we ignore injuries to the mind and heart": Ah, the #InvisibleIllness things we deal with)
I can't think of a better Chronic Illness Meme that seriously discusses our struggles
#chronicillness #chronicallyill #autoimmune #spoonie #invisibleillness
Source: spoonfulsofkindness on Insta
Your chronic illness is only an invisible illness...
#invisibledisability #invisibleillness #invisibleillnessawareness #chronicillness #chronicallyill #autoimmuen #autoimmunedisorder
A man named Brian posted a photo of people in wheelchairs waiting to board a Southwest flight. He tagged Southwest and multiple news outlets because he was outraged so many people were accessing mobility aids.
I don’t like posting content from the hellsite here… but since many businesses and airlines are only on that site … this felt worth a share.
Not because one ableist guy acted entitled and discriminatory. My issue is with the way the official Southwest account chose to deal with him.
Brian’s complaint? It’s unfair people get to use wheelchairs when they can walk. He’s mad they get to pre-board
He doesn’t understand dynamic disability. He can’t comprehend the reasons a person might require a wheelchair to navigate an airport but be able to board unassisted
Brian isn’t alone. When I was still well enough to travel I endured dirty looks and comments from other passengers whenever I would use a wheelchair.
I have invisible illnesses. I don’t “look” sick but my ability to walk or stand in lines is impaired.
I have severe POTS (postural orthostatic tachycardia syndrome). When I stand my blood pools in my legs and my heart rate goes over 150 to compensate & prevent me from fainting.
I sweat, I get dizzy, I throw up. Sometimes I do faint.
It’s uttterly exhausting.
Using a wheelchair in the airport meant I could keep my heart rate at a reasonable level & avoid a serious medical emergency
It conserved energy so that I was less sick when we landed.
Yet I denied myself this accommodation for years due to fear of being mocked by “Brian’s”
These days I expect the Brian’s. Ableism has only gotten worse the last few years - and people are shockingly cruel and entitled.
They get angered by wheelchairs, disabled parking placards and masks. Boy do they get angry over masks.
I’ve learned to tune them out
My devastation from this exchange is due to the response of Southwest Airlines. A major corporation with a huge platform (and I suspect a large number of disabled customers) had a chance to call out ableism and shut it down.
They could have told Brian he was in the wrong
Instead they apologized to him.
I know people will say they had to because they apologize to all upset customers … but they didn’t HAVE to.
The apology gave his complaint validity. It emboldens the ableists among us.
Saying sorry for people who need wheelchairs is sickening. Why are you apologizing for accommodating your passengers?
Why are we pandering and giving in to hate?
Ignore the post or tell Brian it’s wrong to photograph customers & he has no valid complaint
To add insult to injury - another ableist joined in the discussion to ask what Southwest are doing to do about this “problem”.
First - there’s no problem. People requiring accommodation are not a problem to be solved.
Second - the airline legitimized it again!
Their response was that many disabilities are invisible so they aren’t allowed to question the validity of requests.
They implied that there IS an issue with validity in some cases… but that they’re simply not allowed to address it
I can’t speak for Southwest - but every airline I’ve flown has required medical documentation to receive assistance. It HAS been validated.
Even if it wasn’t - no one is getting a wheelchair for “funsies” and even if they were - it doesn’t impact Brian’s experience.
Is his trip ruined because he had to walk to the gate and someone else was pushed? Does it really matter that he had to board after a few other people?
Does he complain about those in first class or who have elite status and get to pre-board?
Of course not. Because Brian isn’t aggrieved - he’s spiteful. He has disdain for disabled people. He doesn’t believe they “deserve” the help.
Shame on Southwest for pandering to people like this. Shame on them for even insinuating people with disabilities are faking
We need to do better. Call this behaviour out when we see it and try and educate others on dynamic disability. More and more people are becoming disabled thanks to “you do you” policies … let’s help build a more inclusive world for everyone.
Southwest… do better.
I’ve blurred the photo but it showed many mostly elderly people sitting in wheelchairs.