#Tag · bonfire.cafe

I need 1 good person to get me out of here please get me out of here. JUST ONE.😭

Stuck with one diagnosed #narcissist/#psychopath but others are the same. I don’t want to die here.

Help please.!!!!!🙏

#MECFS
#SevereME
#LongCovid
#ChronicPain
#Hypothyroidism
#Endometriosis
#Abuse
#NarcissisticAbuse
#Neglect
#FDV
#DV
#MutualAid #MutualAidRequest

Angela Antunovic boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

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

K. Johnstone
4d
Making sense of ME/CFS

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

People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'.

The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking.

It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. — K. Johnstone 4d Making sense of ME/CFS "You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies.

Substack

K. Johnstone (@mecfs)

"You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. The truth is we all try so incredibly hard. We've all tried a million different meditation techniques and supplement protocols. We all do everything we can to 'calm our nervous systems'. If that stuff worked, we'd all be cured. As chronically ill people, every day we endure a reality that most people can't even imagine, and don't want to imagine. "You'd get better if you just..." is their way of refusing to accept our reality. The person speaking is too cowardly to face the enormity of our illness, of what we have to endure in our lives, so they try to make it smaller. They try to make us smaller. "You'd get better if you just...." is aggressive. It's bullying. The person speaking doesn't see themself as a spiteful bully, but that is what they are. Underneath the barely-concealed contempt, is fear. We don't deserve any of it. (As a little post-script, I want to 'confess' that I actually lean really hard into all the mind-body stuff. I do mindfulness exercises several times throughout the day, I do breathwork, I do a tiny bit of very gentle yoga, I do self-massage. Living with chronic illness is a daily struggle and that stuff helps a lot with my emotions. But it hasn't cured any of my chronic illnesses. It infuriates me that the people who tell me to do mindfulness are actually talking about the basic 101 version of mindfulness, when I'm already doing that shit at PhD level.)

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

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

Substack

K. Johnstone (@mecfs)

Cress 🏴󠁧󠁢󠁷󠁬󠁳󠁿 🌻

@lexicaleigh@toot.wales · last month

Afternoon Twters.

Fatigue has hit like a truck today so despite a good sleep last night, I'm back in bed because i can no longer keep myself upright. My mind is not in need of rest, it's firing on all cylinders, but my body is broken today... I'm weak as a kitten. 😴

#ChronicPain #ChronicIllness #Fatigue

Anna

@halcionandon@disabled.social · last month

I need 1 good person to get me out of here please get me out of here. JUST ONE.😭

Stuck with one diagnosed #narcissist/#psychopath but others are the same. I don’t want to die here.

Help please.!!!!!🙏

#MECFS
#SevereME
#LongCovid
#ChronicPain
#Hypothyroidism
#Endometriosis
#Abuse
#NarcissisticAbuse
#Neglect
#FDV
#DV
#MutualAid #MutualAidRequest

nyx mir

@NyxMir@sunny.garden · 2 months ago

Does anyone have a pill/medication organizer they actually like?

Needs to have at least 2-3 slots a day and fit many pills in each slot.

Ideally being able to take days or slots out so you don’t have to bring the whole thing with you, but I can compromise on that if I must.

#chronicIllness #chronicPain

Anna

@halcionandon@disabled.social · 2 months ago

Give me hope & help me escape abuse & finally get out of here this #NewYear. 🎉🥳

Please help by hitting 🔄 BOOST, 📝QUOTE &💸 GIVE IF YOU CAN. Please share this crowdfund on all social media platforms.

🚨### Urgent Appeal: Help Anna #Escape #Abuse – Time is Running Out! 🚨

https://chuffed.org/project/161937-help-anna-escape

Thanks so much for reading! 🙏

#MutualAid #Narcissist #NarcissisticAbuse #Crowdfund #pwlc #chronicillness
@mutualaid
#LongCovid
@longcovid
#MECFS #PWME #SevereME #ChronicPain
@chronicillness
@mecfs

Chuffed

Urgent Appeal: Help Anna Escape Abuse – Time is Running Out!

🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!

phildini boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

Cat Lady's Quilt.
catladysquilts +Chroniclllness 06/28/25
This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all. — Cat Lady's Quilt. catladysquilts +Chroniclllness 06/28/25 This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all.

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

Sabrina Web :privacypride: 📎 boosted

Erika Autumn

@erikaautumn@mastodon.social · 3 months ago

#MutualAidRequest I am almost out of my meds for chronic pain + PTSD & other things since it's gotten cold and the chill is getting to me every minute of every day now, even inside with the heat on.

Goal: $0/30

Venmo: ErikaAutumn
other platforms: message please

It's also my birthday in a week if anyone wants to send more as a treat I'd be incredibly thankful 🤷‍♀️ I am well below the poverty line.

#MutualAid #PTSD #ChronicPain #LGBT #LGBTQ #trans #PleaseBoost

Funkatron (Ed Finkler)

@funkatron@indieweb.social · 3 months ago

I am running into a "mental block" I could use some help with.

I feel "guilty" when I use stuff like Biofreeze or Tiger Balm in fair amount to control my pain, even though it works well and can dramatically improve my mood and function.

This seems silly. but I still find myself resistant. Like I am cheating. Quite opposite of what I would tell anyone in my position.

Do you have experience with this?

#chronicpain #anxiety

Erika Autumn

@erikaautumn@mastodon.social · 3 months ago

#MutualAidRequest I am almost out of my meds for chronic pain + PTSD & other things since it's gotten cold and the chill is getting to me every minute of every day now, even inside with the heat on.

Goal: $0/30

Venmo: ErikaAutumn
other platforms: message please

It's also my birthday in a week if anyone wants to send more as a treat I'd be incredibly thankful 🤷‍♀️ I am well below the poverty line.

#MutualAid #PTSD #ChronicPain #LGBT #LGBTQ #trans #PleaseBoost

Cress 🏴󠁧󠁢󠁷󠁬󠁳󠁿 🌻

@lexicaleigh@toot.wales · 4 months ago

Morning Twters.

#Fatigue has hit HARD today, so other than a shopping delivery, I'm resting because I don't have a choice in that. Feel like I've been hit by a truck of pain and fatigue.

Luckily a quiet physical day tomorrow as well. I can see lots of bed rest.

Hope you're all smashing the week so far! 😘

#ChronicPain

Jenniferplusplus boosted

Mairieli Wessel

@mairieli@mastodon.social · 4 months ago

Are you a software professional living with chronic pain?

We’re studying how chronic pain affects software professionals. By sharing your experience, you’ll help us understand developers’ challenges and improve work sustainability.

☕ We’d love to hear your story over a digital coffee!
👉 Sign up: https://fmru.az1.qualtrics.com/jfe/form/SV_85NGp3dCl9i8R2S

Interviews are conducted in English or Portuguese by a researcher (me!) who also lives with chronic pain.

https://developerpain.github.io

#softwaredevelopment #chronicpain

Chronic Pain in SE

A questionnaire to understand the participants' profiles.

Mairieli Wessel

@mairieli@mastodon.social · 4 months ago

Are you a software professional living with chronic pain?

We’re studying how chronic pain affects software professionals. By sharing your experience, you’ll help us understand developers’ challenges and improve work sustainability.

☕ We’d love to hear your story over a digital coffee!
👉 Sign up: https://fmru.az1.qualtrics.com/jfe/form/SV_85NGp3dCl9i8R2S

Interviews are conducted in English or Portuguese by a researcher (me!) who also lives with chronic pain.

https://developerpain.github.io

#softwaredevelopment #chronicpain

Chronic Pain in SE

A questionnaire to understand the participants' profiles.

Tom Kindlon

@tomkindlon@disabled.social · 4 months ago

Seeing is Believing:Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s & Quebec’s Social Benefits Tribunals

https://digitalcommons.schulichlaw.dal.ca/dlj/vol48/iss2/1/

"advocating for a shift away from entrenched stereotypes towards a more inclusive & equitable system"

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

Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals
Authors
Pascale Malenfant, McGill University Faculty of Law

Keywords
disability, hidden disability, health law, social benefits, administrative law, ideal victim

Abstract
The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system — Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals Authors Pascale Malenfant, McGill University Faculty of Law Keywords disability, hidden disability, health law, social benefits, administrative law, ideal victim Abstract The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like. By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system

Petra

@PetraPhoenix@beige.party · 5 months ago

Fedi, I have a question:

If you were going to do a presentation about lived experience of persistent pain to a team of (primarily) health based academics putting together a research grant proposal, what would you include?

Please boost for reach.

#Pain #research #LivedExperience #academia #AskFedi #ChronicPain

Jess Mahler boosted

Quercus 🟡⚪🟣⚫

@coppercrush@beige.party · 6 months ago

#ADHD ers: please help with an open-ended question regarding medication. Looking for advice based on people's own personal experience, not 'studies have shown'. I would love for a few people to share their personal experience of being on a stimulant for the first time, especially as an adult. For some reason I'm really nervous about taking it for the first time, I think because I have so many other chronic health issues, particularly chronic pain, and I'm really really really hoping this helps me. All of my other health problems have resisted treatment for 15 years so I have a lot of trepidation around having tried dozens and dozens of ineffective treatments.

I don't know exactly what my question is, besides 'what should I expect?' A big part of my problem is that I always attributed my functional difficulties to how poorly I felt, but I'm feeling a little hopeful that maybe the reverse might be true, that my difficulty functioning has caused me extreme stress that has led to my feeling so poorly. Has anyone had a similar experience? I would love to hear about (hopefully success, but be honest) stories of how treating ADHD with medication has intersected with other health conditions. Do you have any advice about navigating these early stages, particularly dealing with side-effects, navigating with practictioners, sleep interactions, and finding the right medication/ dose?

I'm looking for advice based on personal experience, not on 'studies have shown'. Thank you!

#disability #chronicPain #AskFedi #AuDHD #ActuallyAutistic #Boost4Reach #fibromyalgia

Quercus 🟡⚪🟣⚫

@coppercrush@beige.party · 6 months ago

I'm looking for advice based on personal experience, not on 'studies have shown'. Thank you!

#disability #chronicPain #AskFedi #AuDHD #ActuallyAutistic #Boost4Reach #fibromyalgia

Russ Sharek boosted

Juliamon

@juliamon@kind.social · 6 months ago

If someone has chronic pain, and your first instinct is to ask "Have you tried--"

Stop.

"Chronic" means ongoing. It means they have been dealing with it for awhile. If they haven't tried something, it's because it's out of their means. Questioning that they haven't tried everything under the sun implies you think they want to be in pain.

If we say we are in pain, we are not asking for advice. We are telling you how the system has failed us. Tell the system, not us, what to do.