#chroniclife — Public Fediverse posts

"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

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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

1/

@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

@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

@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

@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

@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

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

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

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

"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/

For those of us who are disabled, the struggle is so often between "Do I do these tasks/errands now, even though my pain and fatigue is high and I don't know if I'll be able to complete them, or do I put it all off until tomorrow but risk the distinct possibility that I will feel even worse, still not be capable, then wish I'd attempted the things today."

#disabledlife #disabled #disability #disabilityawareness #fibromyalgia #cptsd #fibrowarrior #chronicillness #chronicpain #chroniclife

(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

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

#chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

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

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

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

🧵
From Chronic Living Therapy e-newsletter:

"Round up of articles spotted online in March/April 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions."

https://chroniclivingtherapy.com/1-elsewhere-web/

@chronicillness
@spoonies @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
#chronicillness #chroniclife #spoonie

1/

@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

@gardening #DisabilityAccessibility
For those with tactile problems &/or mild #neuropathy in your hands. I've a seed recommendation, namely Galilee #Spinach because said seeds beyond being about 1/8 the size of corn, also have spines extending beyond just the ball that's typical of spinach seeds.

Just putting them in to germinate today & I've never had an easier time of handling similarly sized seeds, even as my neuropathy is sizable today. #ChronicLife #Gardening

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

https://batemanhornecenter.org/wp-content/uploads/2025/02/202050218-Support-Group-Recap.pdf

@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

Support Group Recap: Self-Compassion Amidst Chronic Illness February 11, 2025
https://batemanhornecenter.org/wp-content/uploads/2025/02/20250211-Support-Group-Recap.pdf

@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

🧵
Support Group Recap: Facing the Holidays with Chronic Illness (December 17, 2004)

https://batemanhornecenter.org/wp-content/uploads/2024/12/20241217-Support-Group-Recap.pdf

#MEcfs #LongCovid #chronicillness #chroniclife #ChronicPain #Spoonielife @chronicillness
@spoonies
@longcovid
@mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #Fibrositis #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

1/

5/

“Focus on what is within your control

Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. (contd)”

#chronicallyill #longtermillness #chronicillness #chroniclife @mecfs
#MEcfs #CFS #PwME #LongCovid @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FM #POTS

5/

“Focus on what is within your control

Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. (contd)”

#chronicallyill #longtermillness #chronicillness #chroniclife @mecfs
#MEcfs #CFS #PwME #LongCovid @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FM #POTS

5/

“Focus on what is within your control

Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. (contd)”

#chronicallyill #longtermillness #chronicillness #chroniclife @mecfs
#MEcfs #CFS #PwME #LongCovid @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FM #POTS

5/

“Focus on what is within your control

Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. (contd)”

#chronicallyill #longtermillness #chronicillness #chroniclife @mecfs
#MEcfs #CFS #PwME #LongCovid @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FM #POTS

5/

“Focus on what is within your control

Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. (contd)”

#chronicallyill #longtermillness #chronicillness #chroniclife @mecfs
#MEcfs #CFS #PwME #LongCovid @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FM #POTS

Canada:
Environmental sensitivities and scent-free policies: A guide for federally regulated employers and
service providers (2024) - Canadian Human Rights Commission
https://www.chrc-ccdp.gc.ca/en/resources/publications/environmental-sensitivities-and-scent-free-policies

#MCS #MultipleChemicalSensitivities #ScentFree
@chronicillness
@spoonies
#chronicillness
#chroniclife

Canada:
Environmental sensitivities and scent-free policies: A guide for federally regulated employers and
service providers (2024) - Canadian Human Rights Commission
https://www.chrc-ccdp.gc.ca/en/resources/publications/environmental-sensitivities-and-scent-free-policies

#MCS #MultipleChemicalSensitivities #ScentFree
@chronicillness
@spoonies
#chronicillness
#chroniclife

Canada:
Environmental sensitivities and scent-free policies: A guide for federally regulated employers and
service providers (2024) - Canadian Human Rights Commission
https://www.chrc-ccdp.gc.ca/en/resources/publications/environmental-sensitivities-and-scent-free-policies

#MCS #MultipleChemicalSensitivities #ScentFree
@chronicillness
@spoonies
#chronicillness
#chroniclife

Canada:
Environmental sensitivities and scent-free policies: A guide for federally regulated employers and
service providers (2024) - Canadian Human Rights Commission
https://www.chrc-ccdp.gc.ca/en/resources/publications/environmental-sensitivities-and-scent-free-policies

#MCS #MultipleChemicalSensitivities #ScentFree
@chronicillness
@spoonies
#chronicillness
#chroniclife

Canada:
Environmental sensitivities and scent-free policies: A guide for federally regulated employers and
service providers (2024) - Canadian Human Rights Commission
https://www.chrc-ccdp.gc.ca/en/resources/publications/environmental-sensitivities-and-scent-free-policies

#MCS #MultipleChemicalSensitivities #ScentFree
@chronicillness
@spoonies
#chronicillness
#chroniclife