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Jess Mahler boosted
SleepyCatten
SleepyCatten
@SleepyCatten@cultofshiv.wtf  ·  activity timestamp 3 days ago

Up front, please note that we sought explicit permission before even drafting this, asked for checks of drafts and redrafts, and ensured final approval before publishing this post.

Please consider this post a last-ditch plea for support and help, where all other efforts over the last month have failed spectacularly, from somebody who does not want to lose a friend, but who is themselves powerless to help in any meaningful way.

We hate that we've had to write this post, and that we're begging for help here, but we have exhausted all other options we're aware of.

Whom this is about

This post is about @lexi.

Some of you may know her already. Of those that do, some of you may know why she suddenly stopped posting for a while on fedi, but we suspect that many do not.

About Lexi

Lexi is a neurodivergent, queer, trans+ girl who is stuck in Virginia, USA. Her life to-date has been filled with neglect, abuse, and abandonment by those around her.

She began relying on self-harm as a coping mechanism... and never stopped.

Sadly, we need to give details here, so please double-check the CWs again before continuing. There's no turning back beyond this point.

Lexi's past: earlier breaks, false friendships, abuse, and sexual assault

Lexi has experienced several major mental health breaks over her life, and has been abused in many ways by those she believed cared for her.

During a break in 2019-2020, Lexi's parents responded to seeing her wounds by having her institutionalised for 8 months.

Lexi began to build up what she believed to be her first friend base in about 2020. She even entered into a relationship with somebody within this group. However, she did not realise at first just how abusive all of them, especially her partner, were being to her. And over time, they all pushed Lexi to breaking point.

When she found the strength and courage to speak up and call them out in 2023, everything went nuclear. The entire group completely lost their shit, doing everything they could to hurt her, including:

  • Mocking her for self-harming and suicide attempts;
  • Mocking her for her eating disorder;
  • Mocking her for failing to complete school;
  • Threatening to kill her; and
  • Spreading lies to everybody she loved.

They even had the fucking malicious gall to say that she had been "quiet every other fucking time" they abused or mistreated her.

And then, after all of this, they abandoned her entirely.

In July 2025, Lexi tried to take her own life and very-nearly succeeded. She was sent to hospital, but instead of being given the urgent, emergency care she needed, she:

  • Was left for hours without any help or assistance;
  • Witnessed someone die in front of her; and
  • Didn't even get her wounds treated, leading to permanent nerve damage and daily, constant neuropathic pain.

On top of this major medical neglect, she was then fobbed off to a social worker, who promised her that they wouldn't forcibly institutionalise her, but lied and did so anyway.

Lexi had to BEG her way out of that forced institutionalisation, which required her to heavily mask and play the role of the "model patient".

If you don't know how truly cruel and torturous institutionalisation is for anybody, let alone a neurodivergent, trans+, queer person in the US, please pause reading this post, look up how inhumane it is, before reading any further.

After everything above, feeling a desperate need to not be alone, Lexi accepted an offer to go to somebody's house… and was sexually assaulted (raped) 😔

We've intentionally left out a lot of stuff that Lexi has informed us about, as it's already been difficult enough for her: we don't want her to have to keep reliving, retelling, and revisiting every awful thing she's ever been through 🥺

We've only given this much info in order to make it clear just how badly Lexi has been mistreated by most people her entire life.

And this is what leads into recent events.

What happened to Lexi?

The event

In early October 2025, Lexi experienced another serious mental health break and tried to take her own life again.

She was extremely dissociative, anaemic, and deprived, and remembers very little of the experience. Her friends naïvely called the authorities for assistance, despite Lexi having pleaded with them previously to never do so, based on her previous torturous experiences.

Instead of sending medical assistance, the authorities sent out cops 🤦‍♀️

In desperation, Lexi tried to end herself as swiftly as possible.

Predictably, instead of helping her, the cops proceeded to taze, physically abuse, and assault her.

Lexi does not know precisely what her friends did, but it resulted in the state being temporarily given custody of her, so that they could bypass the fact that she was an adult, and force her into being institutionalised.

Further abuse by cops

Lexi was thrown into a tiny cell, with a spit bag forced over her head. She tried to use it to strangle herself, which just led to them taking it away, leaving her even more broken and sobbing, pleading to die.

But the cops, being heinous scum, didn't just stop there. They physically, mentally, and emotionally abused her by:

  • Moving her to a different cell, for which the paint, light, and sounds were neurodivergent torture;
  • Forcing her to be naked for over 2 weeks;
  • Feeding her food that made her throw up;
  • Withholding all her meds, including:
  • Antidepressants (an SSRI).
  • Most of her feminising GAHT.
  • All painkillers.
  • Denying her basic accommodations for neurodivergence (e.g., sunglasses for light sensitivity; noise-cancelling headphones);
  • Confiscating her updated passport (with her correct, legal name) and proceeding to deadname and misgender her.

Having her SSRI meds forcibly taken from her and then denied caused Lexi sudden, extreme antidepressant withdrawal. She already suffers with intense nerve pain and major sensitivity issues due to being neurodivergent, so the effects were made even worse.

It made all her sensory issues beyond overwhelming.

It was so bad that it made her brain feel like it was spasming from electric shocks over and over from the pervasive light and noise.

Her mother was able to deliver her spironolactone (an antiandrogen) a week after incarceration, but Lexi was only given 1 pill a day, despite her being prescribed 1 in the morning and 2 in the evening.

All her other meds, including additional GAHT ones (e.g., estradiol; micronised progesterone), were intentionally and maliciously withheld from her.

In terms of GAHT alone, this was a form of forced medical conversion therapy, which is considered a form of torture.

From jail to institutions

Lexi was forced to endure the following in order:

  • Several weeks in jail;
  • A month of involuntarily institutionalisation in one facility; and
  • A further month of involuntarily institutionalisation in another institution.

After her lawyer was allowed to speak with her in jail, her friends co-ordinated with her lawyer to write letters of support about her character, making it clear that she's not a bad person and to plead for the judge to be merciful to her.

These letters ended up being presented to the judge at the case, as you'll read below, but he didn't even end up reading them Sighing_Face 🤦‍♀️

Lexi was only released back home until the preliminary hearing date (2026-02-02) after her lawyer finally managed to convince them that holding her was unnecessary.

Trumped-up charges

In spite of being wronged, Lexi was charged with trumped up felony charges as follows:

  • 1 of "malicious intent";
  • 2 of "assault/battery" on officers.

Prior discussion with lawyer

Lexi's lawyer sadly gave her unreasonable hopes, advising her that:

  • The authorities would be foolish to try to escalate, based on the bogus charges she'd been accused of;
  • And if they did try to escalate, he'd take it to the media to make them look bad.
  • He'd try to get her passport back; and
  • He would try to get the felony charges dismissed on the basis of temporary insanity.

This sounded almost like good news. Surely nothing could go wrong… right?

Right?! 🥺😔

The preliminary hearing outcome

Suffice to say, it did not go well.

Lexi was given only 2 choices:

  1. Jail for a year, despite doing nothing wrong.
  2. A mental health bond for 2 years.

She was forced to make a decision right there and then, with no opportunity provided to think and reflect with her lawyer.

In order to avoid jail, she had no choice but to pick option 2, and had to sign legally-binding papers immediately.

Whilst a mental health bond might seem like a softer option, in reality it's just a longer, different kind of punishment for Lexi, whom -- we repeat -- did nothing wrong.

This legal bond takes away Lexi's freedoms and rights, compelling her to:

  • Accept and follow every instruction they give her;
  • Accept any form of "treatment" they prescribe; and
  • Take any medication at any dose they require.

Furthermore, she cannot leave the US for 2 years and will be actively monitored to ensure her compliance.

Her other medical and support needs were, of course, not taken into consideration, particularly the constant pain she is in.

Her lawyer seemingly forgot his threat to go to the media about her mistreatment… or just somehow didn't consider this option unethical.

The only saving grace is that she's not been bound specifically to Virginia, though it's possible her court-mandated treatment may be based there.

And Lexi did finally at least get her passport back... for what little it's worth right now 🥺

Why Lexi needs urgent help

Lexi must attend a further stressful, painful court date in a month's time (2026-03-04), at which point all of the above will formally commence.

When it does, Lexi will begin 2 years of an even-worse hell than she's currently in.

And as it stands, Lexi will not even survive until the court date.

She is fighting a daily battle with neuropathic pain, depression, anxiety, stress, dissociation, and -- perhaps worse than all of these -- loneliness, living with parents who cannot meet, are not meeting, and will never meet her support needs.

And without the ability to leave the US, she will not be able to see her girlfriends (@lea and @wiki) at all now for over 2 years 😢

Lexi is just one bad break away from being gone forever.

What Lexi urgently needs

Lexi needs a quiet, stable safe place to escape to, away from her parents' house.

Somewhere she can hide away when she needs to be alone.
Somewhere and hang out to socialise whenever she's lonely.
Somewhere away from all the trauma.

She needs some folks, any folks, whom she can trust and rely on to around her: folks who will understand and respect her needs and boundaries.

She needs to be around others who won't judge her, criticise her, gaslight her, abuse her, or abandon her, and who won't ever call the emergency services on her again 🥺

She's had too much of this already in her life 😔

She just needs a safe place, with kind, supportive folks. And sadly it has to be within the US... as we don't know anybody who could successfully smuggle her into a safe adjacent country where she could successfully claim asylum¹.

Again, we must stress that Lexi will certainly not survive the next month even without support, let alone the next 2 years.

Reaching out

We are begging you: if you know Lexi even somewhat, please reach out to offer her support PleadingFaceWithRedHearts

If you're worried about overloading her, you could always reach out to her girlfriends to ask how you can help.

At a push you can reach out to us, but honestly we cannot do any more than message her here or on Signal. All we've done is try to be there for her and help a little where we can behind the scenes.

We desperately want Lexi to be able to live, but she needs a decent quality of life for that to happen.

She's not really living right now, and she hasn't been for a long time: she's just existing... and existing isn't enough of a reason when you're constantly suffering 😔

Unfortunately that is something that we are intimately familiar with ourselves.

Lexi needs help and support, urgently and desperately.

If you can offer this to her, and can promise that you will never put her at risk, then please reach out to her 🥺

Thank you 🫶

#MentalHealth #depression #anxiety #NeuropathicPain #trans #transgender #TransFem #queer #LGBTQ+ #LGBTQIA+ #neurodivergent #neurodivergence #disability #ChronicPain #ActuallyAutistic #ACAB #HealthCare #PleaseBoost #BoostsWelcome #EmergencyHelpNeeded #UrgentHelp #help #support #fediverse #USA #Virginia

¹ For legal reasons, we must advise that this is entirely in jest, as part of our dark humour for coping with all of this.

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SleepyCatten
SleepyCatten
@SleepyCatten@cultofshiv.wtf  ·  activity timestamp 3 days ago

Up front, please note that we sought explicit permission before even drafting this, asked for checks of drafts and redrafts, and ensured final approval before publishing this post.

Please consider this post a last-ditch plea for support and help, where all other efforts over the last month have failed spectacularly, from somebody who does not want to lose a friend, but who is themselves powerless to help in any meaningful way.

We hate that we've had to write this post, and that we're begging for help here, but we have exhausted all other options we're aware of.

Whom this is about

This post is about @lexi.

Some of you may know her already. Of those that do, some of you may know why she suddenly stopped posting for a while on fedi, but we suspect that many do not.

About Lexi

Lexi is a neurodivergent, queer, trans+ girl who is stuck in Virginia, USA. Her life to-date has been filled with neglect, abuse, and abandonment by those around her.

She began relying on self-harm as a coping mechanism... and never stopped.

Sadly, we need to give details here, so please double-check the CWs again before continuing. There's no turning back beyond this point.

Lexi's past: earlier breaks, false friendships, abuse, and sexual assault

Lexi has experienced several major mental health breaks over her life, and has been abused in many ways by those she believed cared for her.

During a break in 2019-2020, Lexi's parents responded to seeing her wounds by having her institutionalised for 8 months.

Lexi began to build up what she believed to be her first friend base in about 2020. She even entered into a relationship with somebody within this group. However, she did not realise at first just how abusive all of them, especially her partner, were being to her. And over time, they all pushed Lexi to breaking point.

When she found the strength and courage to speak up and call them out in 2023, everything went nuclear. The entire group completely lost their shit, doing everything they could to hurt her, including:

  • Mocking her for self-harming and suicide attempts;
  • Mocking her for her eating disorder;
  • Mocking her for failing to complete school;
  • Threatening to kill her; and
  • Spreading lies to everybody she loved.

They even had the fucking malicious gall to say that she had been "quiet every other fucking time" they abused or mistreated her.

And then, after all of this, they abandoned her entirely.

In July 2025, Lexi tried to take her own life and very-nearly succeeded. She was sent to hospital, but instead of being given the urgent, emergency care she needed, she:

  • Was left for hours without any help or assistance;
  • Witnessed someone die in front of her; and
  • Didn't even get her wounds treated, leading to permanent nerve damage and daily, constant neuropathic pain.

On top of this major medical neglect, she was then fobbed off to a social worker, who promised her that they wouldn't forcibly institutionalise her, but lied and did so anyway.

Lexi had to BEG her way out of that forced institutionalisation, which required her to heavily mask and play the role of the "model patient".

If you don't know how truly cruel and torturous institutionalisation is for anybody, let alone a neurodivergent, trans+, queer person in the US, please pause reading this post, look up how inhumane it is, before reading any further.

After everything above, feeling a desperate need to not be alone, Lexi accepted an offer to go to somebody's house… and was sexually assaulted (raped) 😔

We've intentionally left out a lot of stuff that Lexi has informed us about, as it's already been difficult enough for her: we don't want her to have to keep reliving, retelling, and revisiting every awful thing she's ever been through 🥺

We've only given this much info in order to make it clear just how badly Lexi has been mistreated by most people her entire life.

And this is what leads into recent events.

What happened to Lexi?

The event

In early October 2025, Lexi experienced another serious mental health break and tried to take her own life again.

She was extremely dissociative, anaemic, and deprived, and remembers very little of the experience. Her friends naïvely called the authorities for assistance, despite Lexi having pleaded with them previously to never do so, based on her previous torturous experiences.

Instead of sending medical assistance, the authorities sent out cops 🤦‍♀️

In desperation, Lexi tried to end herself as swiftly as possible.

Predictably, instead of helping her, the cops proceeded to taze, physically abuse, and assault her.

Lexi does not know precisely what her friends did, but it resulted in the state being temporarily given custody of her, so that they could bypass the fact that she was an adult, and force her into being institutionalised.

Further abuse by cops

Lexi was thrown into a tiny cell, with a spit bag forced over her head. She tried to use it to strangle herself, which just led to them taking it away, leaving her even more broken and sobbing, pleading to die.

But the cops, being heinous scum, didn't just stop there. They physically, mentally, and emotionally abused her by:

  • Moving her to a different cell, for which the paint, light, and sounds were neurodivergent torture;
  • Forcing her to be naked for over 2 weeks;
  • Feeding her food that made her throw up;
  • Withholding all her meds, including:
  • Antidepressants (an SSRI).
  • Most of her feminising GAHT.
  • All painkillers.
  • Denying her basic accommodations for neurodivergence (e.g., sunglasses for light sensitivity; noise-cancelling headphones);
  • Confiscating her updated passport (with her correct, legal name) and proceeding to deadname and misgender her.

Having her SSRI meds forcibly taken from her and then denied caused Lexi sudden, extreme antidepressant withdrawal. She already suffers with intense nerve pain and major sensitivity issues due to being neurodivergent, so the effects were made even worse.

It made all her sensory issues beyond overwhelming.

It was so bad that it made her brain feel like it was spasming from electric shocks over and over from the pervasive light and noise.

Her mother was able to deliver her spironolactone (an antiandrogen) a week after incarceration, but Lexi was only given 1 pill a day, despite her being prescribed 1 in the morning and 2 in the evening.

All her other meds, including additional GAHT ones (e.g., estradiol; micronised progesterone), were intentionally and maliciously withheld from her.

In terms of GAHT alone, this was a form of forced medical conversion therapy, which is considered a form of torture.

From jail to institutions

Lexi was forced to endure the following in order:

  • Several weeks in jail;
  • A month of involuntarily institutionalisation in one facility; and
  • A further month of involuntarily institutionalisation in another institution.

After her lawyer was allowed to speak with her in jail, her friends co-ordinated with her lawyer to write letters of support about her character, making it clear that she's not a bad person and to plead for the judge to be merciful to her.

These letters ended up being presented to the judge at the case, as you'll read below, but he didn't even end up reading them Sighing_Face 🤦‍♀️

Lexi was only released back home until the preliminary hearing date (2026-02-02) after her lawyer finally managed to convince them that holding her was unnecessary.

Trumped-up charges

In spite of being wronged, Lexi was charged with trumped up felony charges as follows:

  • 1 of "malicious intent";
  • 2 of "assault/battery" on officers.

Prior discussion with lawyer

Lexi's lawyer sadly gave her unreasonable hopes, advising her that:

  • The authorities would be foolish to try to escalate, based on the bogus charges she'd been accused of;
  • And if they did try to escalate, he'd take it to the media to make them look bad.
  • He'd try to get her passport back; and
  • He would try to get the felony charges dismissed on the basis of temporary insanity.

This sounded almost like good news. Surely nothing could go wrong… right?

Right?! 🥺😔

The preliminary hearing outcome

Suffice to say, it did not go well.

Lexi was given only 2 choices:

  1. Jail for a year, despite doing nothing wrong.
  2. A mental health bond for 2 years.

She was forced to make a decision right there and then, with no opportunity provided to think and reflect with her lawyer.

In order to avoid jail, she had no choice but to pick option 2, and had to sign legally-binding papers immediately.

Whilst a mental health bond might seem like a softer option, in reality it's just a longer, different kind of punishment for Lexi, whom -- we repeat -- did nothing wrong.

This legal bond takes away Lexi's freedoms and rights, compelling her to:

  • Accept and follow every instruction they give her;
  • Accept any form of "treatment" they prescribe; and
  • Take any medication at any dose they require.

Furthermore, she cannot leave the US for 2 years and will be actively monitored to ensure her compliance.

Her other medical and support needs were, of course, not taken into consideration, particularly the constant pain she is in.

Her lawyer seemingly forgot his threat to go to the media about her mistreatment… or just somehow didn't consider this option unethical.

The only saving grace is that she's not been bound specifically to Virginia, though it's possible her court-mandated treatment may be based there.

And Lexi did finally at least get her passport back... for what little it's worth right now 🥺

Why Lexi needs urgent help

Lexi must attend a further stressful, painful court date in a month's time (2026-03-04), at which point all of the above will formally commence.

When it does, Lexi will begin 2 years of an even-worse hell than she's currently in.

And as it stands, Lexi will not even survive until the court date.

She is fighting a daily battle with neuropathic pain, depression, anxiety, stress, dissociation, and -- perhaps worse than all of these -- loneliness, living with parents who cannot meet, are not meeting, and will never meet her support needs.

And without the ability to leave the US, she will not be able to see her girlfriends (@lea and @wiki) at all now for over 2 years 😢

Lexi is just one bad break away from being gone forever.

What Lexi urgently needs

Lexi needs a quiet, stable safe place to escape to, away from her parents' house.

Somewhere she can hide away when she needs to be alone.
Somewhere and hang out to socialise whenever she's lonely.
Somewhere away from all the trauma.

She needs some folks, any folks, whom she can trust and rely on to around her: folks who will understand and respect her needs and boundaries.

She needs to be around others who won't judge her, criticise her, gaslight her, abuse her, or abandon her, and who won't ever call the emergency services on her again 🥺

She's had too much of this already in her life 😔

She just needs a safe place, with kind, supportive folks. And sadly it has to be within the US... as we don't know anybody who could successfully smuggle her into a safe adjacent country where she could successfully claim asylum¹.

Again, we must stress that Lexi will certainly not survive the next month even without support, let alone the next 2 years.

Reaching out

We are begging you: if you know Lexi even somewhat, please reach out to offer her support PleadingFaceWithRedHearts

If you're worried about overloading her, you could always reach out to her girlfriends to ask how you can help.

At a push you can reach out to us, but honestly we cannot do any more than message her here or on Signal. All we've done is try to be there for her and help a little where we can behind the scenes.

We desperately want Lexi to be able to live, but she needs a decent quality of life for that to happen.

She's not really living right now, and she hasn't been for a long time: she's just existing... and existing isn't enough of a reason when you're constantly suffering 😔

Unfortunately that is something that we are intimately familiar with ourselves.

Lexi needs help and support, urgently and desperately.

If you can offer this to her, and can promise that you will never put her at risk, then please reach out to her 🥺

Thank you 🫶

#MentalHealth #depression #anxiety #NeuropathicPain #trans #transgender #TransFem #queer #LGBTQ+ #LGBTQIA+ #neurodivergent #neurodivergence #disability #ChronicPain #ActuallyAutistic #ACAB #HealthCare #PleaseBoost #BoostsWelcome #EmergencyHelpNeeded #UrgentHelp #help #support #fediverse #USA #Virginia

¹ For legal reasons, we must advise that this is entirely in jest, as part of our dark humour for coping with all of this.

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Sabrina Web :privacypride: 📎 boosted
Anna
Anna
@halcionandon@disabled.social  ·  activity timestamp 3 weeks ago

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

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Angela Antunovic boosted
Tom Kindlon
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 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.
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.)
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Tom Kindlon
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 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.
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.)
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@lexicaleigh@toot.wales  ·  activity timestamp 3 weeks ago

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

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Anna
Anna
@halcionandon@disabled.social  ·  activity timestamp 3 weeks ago

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

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nyx mir
nyx mir
@NyxMir@sunny.garden  ·  activity timestamp last month

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

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Anna
Anna
@halcionandon@disabled.social  ·  activity timestamp 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! 
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phildini boosted
Tom Kindlon
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 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.
 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.
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Tom Kindlon
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 2 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.
 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.
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Sabrina Web :privacypride: 📎 boosted
Erika Autumn
Erika Autumn
@erikaautumn@mastodon.social  ·  activity timestamp 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

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Funkatron (Ed Finkler)
Funkatron (Ed Finkler)
@funkatron@indieweb.social  ·  activity timestamp 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

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Erika Autumn
Erika Autumn
@erikaautumn@mastodon.social  ·  activity timestamp 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

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@lexicaleigh@toot.wales  ·  activity timestamp 3 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

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Jenniferplusplus boosted
Mairieli Wessel
Mairieli Wessel
@mairieli@mastodon.social  ·  activity timestamp 3 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

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Chronic Pain in SE

A questionnaire to understand the participants' profiles.
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Mairieli Wessel
Mairieli Wessel
@mairieli@mastodon.social  ·  activity timestamp 3 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

Sorry, no caption provided by author
Sorry, no caption provided by author
Sorry, no caption provided by author

Chronic Pain in SE

A questionnaire to understand the participants' profiles.
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Tom Kindlon
Tom Kindlon
@tomkindlon@disabled.social  ·  activity timestamp 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
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
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Petra
Petra
@PetraPhoenix@beige.party  ·  activity timestamp 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

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Jess Mahler boosted
Quercus 🟡⚪🟣⚫
Quercus 🟡⚪🟣⚫
@coppercrush@beige.party  ·  activity timestamp 5 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

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