Worauf einen als chronisch Kranke niemand vorbereitet, ist diese gottlose Einsamkeit wenn man zu diversen Einladungen nicht kommen kann weil zu viele Leute, zu viele Kinder, zu laut, zu ermüdend und kein wirklicher Rückzugsort möglich, während der Partner wegen einem natürlich nicht verzichten soll und darum hingeht, und dann hockt man halt vor allem an Feiertagen alleine zuhause und denkt sich „Ja danke Körper“.
#chroniclife #chronischkrank

"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

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🧵
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

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🧵
"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

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@the I agree, it's like when I refer to myself as an invertebrate (as my spine has more damaged disks than intact & fully functional ones by a factor of at least 2 to 1) and yes I've been told to "stop that", when it's a pretty close to reality of a joke.

I'm not harming anyone in this & it's tiresome to get others trying to micromanage my choice in terms used for my medical conditions.
#ChronicLife #SpinalStenosis #DegenerativeDiskDisease #Spondylitis

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