#neis — Public Fediverse posts

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

#art #bodyHorror #chronicIllness #chronicPain #coatHangerPain #coathangerpain #disabilityArt #disabilityJustice #Dysautonomia #eds #heds #longCovid #longcovid #medicalArt #MillionsMissing #neis #NEISvoid #POTS #pwLC #pwme #spoonie

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

#art #bodyHorror #chronicIllness #chronicPain #coatHangerPain #coathangerpain #disabilityArt #disabilityJustice #Dysautonomia #eds #heds #longCovid #longcovid #medicalArt #MillionsMissing #neis #NEISvoid #POTS #pwLC #pwme #spoonie

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

#art #bodyHorror #chronicIllness #chronicPain #coatHangerPain #coathangerpain #disabilityArt #disabilityJustice #Dysautonomia #eds #heds #longCovid #longcovid #medicalArt #MillionsMissing #neis #NEISvoid #POTS #pwLC #pwme #spoonie

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

#art #bodyHorror #chronicIllness #chronicPain #coatHangerPain #coathangerpain #disabilityArt #disabilityJustice #Dysautonomia #eds #heds #longCovid #longcovid #medicalArt #MillionsMissing #neis #NEISvoid #POTS #pwLC #pwme #spoonie

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

#art #bodyHorror #chronicIllness #chronicPain #coatHangerPain #coathangerpain #disabilityArt #disabilityJustice #Dysautonomia #eds #heds #longCovid #longcovid #medicalArt #MillionsMissing #neis #NEISvoid #POTS #pwLC #pwme #spoonie

I like how the blue grey stripes, the inspo being louvre (Fr. opening/body of work) blinds…(2 double entendres) also remind me of a prison, bc that’s what it felt like for years. I like how when I added the light streaming through, it looked like caution or construction barriers. I was getting ready to be renovated. I learned a lot about myself & the world in this time, learning to live with the pain #NEIS, still trying to seek the light, joy, my raison d’etre.
#chronicpain #disabilty

I like how the blue grey stripes, the inspo being louvre (Fr. opening/body of work) blinds…(2 double entendres) also remind me of a prison, bc that’s what it felt like for years. I like how when I added the light streaming through, it looked like caution or construction barriers. I was getting ready to be renovated. I learned a lot about myself & the world in this time, learning to live with the pain #NEIS, still trying to seek the light, joy, my raison d’etre.
#chronicpain #disabilty

I like how the blue grey stripes, the inspo being louvre (Fr. opening/body of work) blinds…(2 double entendres) also remind me of a prison, bc that’s what it felt like for years. I like how when I added the light streaming through, it looked like caution or construction barriers. I was getting ready to be renovated. I learned a lot about myself & the world in this time, learning to live with the pain #NEIS, still trying to seek the light, joy, my raison d’etre.
#chronicpain #disabilty

I like how the blue grey stripes, the inspo being louvre (Fr. opening/body of work) blinds…(2 double entendres) also remind me of a prison, bc that’s what it felt like for years. I like how when I added the light streaming through, it looked like caution or construction barriers. I was getting ready to be renovated. I learned a lot about myself & the world in this time, learning to live with the pain #NEIS, still trying to seek the light, joy, my raison d’etre.
#chronicpain #disabilty

I like how the blue grey stripes, the inspo being louvre (Fr. opening/body of work) blinds…(2 double entendres) also remind me of a prison, bc that’s what it felt like for years. I like how when I added the light streaming through, it looked like caution or construction barriers. I was getting ready to be renovated. I learned a lot about myself & the world in this time, learning to live with the pain #NEIS, still trying to seek the light, joy, my raison d’etre.
#chronicpain #disabilty

@epu
It really was. It was a long time ago now & Ive been healed for at least 2 decades completely.
I was misdiagnosed and mistreated by doctors, and a lot of family and friends who abandoned me unable to deal with any of it.

I learned a lot about the limitations of people and that I was on my own…but also how to seek joy, contentment, & laughter even if I have to manufacture it, (which helped heal me).
It was #NEIS and I had to somehow find a way to live. Find the happy despite the dark.

@epu
It really was. It was a long time ago now & Ive been healed for at least 2 decades completely.
I was misdiagnosed and mistreated by doctors, and a lot of family and friends who abandoned me unable to deal with any of it.

I learned a lot about the limitations of people and that I was on my own…but also how to seek joy, contentment, & laughter even if I have to manufacture it, (which helped heal me).
It was #NEIS and I had to somehow find a way to live. Find the happy despite the dark.

@epu
It really was. It was a long time ago now & Ive been healed for at least 2 decades completely.
I was misdiagnosed and mistreated by doctors, and a lot of family and friends who abandoned me unable to deal with any of it.

I learned a lot about the limitations of people and that I was on my own…but also how to seek joy, contentment, & laughter even if I have to manufacture it, (which helped heal me).
It was #NEIS and I had to somehow find a way to live. Find the happy despite the dark.

@epu
It really was. It was a long time ago now & Ive been healed for at least 2 decades completely.
I was misdiagnosed and mistreated by doctors, and a lot of family and friends who abandoned me unable to deal with any of it.

I learned a lot about the limitations of people and that I was on my own…but also how to seek joy, contentment, & laughter even if I have to manufacture it, (which helped heal me).
It was #NEIS and I had to somehow find a way to live. Find the happy despite the dark.

@epu
It really was. It was a long time ago now & Ive been healed for at least 2 decades completely.
I was misdiagnosed and mistreated by doctors, and a lot of family and friends who abandoned me unable to deal with any of it.

I learned a lot about the limitations of people and that I was on my own…but also how to seek joy, contentment, & laughter even if I have to manufacture it, (which helped heal me).
It was #NEIS and I had to somehow find a way to live. Find the happy despite the dark.

Vacancies that may suit ND and queer folk.

https://www.theworkinclusionproject.co.uk/vacancies/?s=09

#uk #FediHire @actuallyautistic #ActuallyAutistic #ActuallyAuDHD #ActuallyADHD #lgbtq #lgbtqia #LGBTQIA2S #queer #inclusion #DisabilityInclusion #fediHired #fediHiring #jobs #OCD #NEIS #accessibility #LongCovid #deaf #blind #DeafBlind #chronicIllness #remoteWork #remoteJobs #England #Wales

Vacancies that may suit ND and queer folk.

https://www.theworkinclusionproject.co.uk/vacancies/?s=09

#uk #FediHire @actuallyautistic #ActuallyAutistic #ActuallyAuDHD #ActuallyADHD #lgbtq #lgbtqia #LGBTQIA2S #queer #inclusion #DisabilityInclusion #fediHired #fediHiring #jobs #OCD #NEIS #accessibility #LongCovid #deaf #blind #DeafBlind #chronicIllness #remoteWork #remoteJobs #England #Wales

Vacancies that may suit ND and queer folk.

https://www.theworkinclusionproject.co.uk/vacancies/?s=09

#uk #FediHire @actuallyautistic #ActuallyAutistic #ActuallyAuDHD #ActuallyADHD #lgbtq #lgbtqia #LGBTQIA2S #queer #inclusion #DisabilityInclusion #fediHired #fediHiring #jobs #OCD #NEIS #accessibility #LongCovid #deaf #blind #DeafBlind #chronicIllness #remoteWork #remoteJobs #England #Wales

Vacancies that may suit ND and queer folk.

https://www.theworkinclusionproject.co.uk/vacancies/?s=09

#uk #FediHire @actuallyautistic #ActuallyAutistic #ActuallyAuDHD #ActuallyADHD #lgbtq #lgbtqia #LGBTQIA2S #queer #inclusion #DisabilityInclusion #fediHired #fediHiring #jobs #OCD #NEIS #accessibility #LongCovid #deaf #blind #DeafBlind #chronicIllness #remoteWork #remoteJobs #England #Wales

Vacancies that may suit ND and queer folk.

https://www.theworkinclusionproject.co.uk/vacancies/?s=09

#uk #FediHire @actuallyautistic #ActuallyAutistic #ActuallyAuDHD #ActuallyADHD #lgbtq #lgbtqia #LGBTQIA2S #queer #inclusion #DisabilityInclusion #fediHired #fediHiring #jobs #OCD #NEIS #accessibility #LongCovid #deaf #blind #DeafBlind #chronicIllness #remoteWork #remoteJobs #England #Wales

12 February
Been trying to get some admin sorted. As soon as I start on one bit, others start toppling over like dominoes. All feels so precarious. So many systems that warn of consequences for not making calls in time, but don't actually answer their phones.
One of them is DWP and I dread getting into trouble.
Christmas interrupted my routine, which was shaky at best, so I feel like I should plan better, but the inertia or transition from not-Christmas to Christmas and back again will always derail me.
That on top of my on-going battle to navigate the uncertainty of what I can cope with from day to day. It's mid February and I've only just checked on dates I should have transferred to my 2024 calendar. #NEIS No end in sight.

12 February
Been trying to get some admin sorted. As soon as I start on one bit, others start toppling over like dominoes. All feels so precarious. So many systems that warn of consequences for not making calls in time, but don't actually answer their phones.
One of them is DWP and I dread getting into trouble.
Christmas interrupted my routine, which was shaky at best, so I feel like I should plan better, but the inertia or transition from not-Christmas to Christmas and back again will always derail me.
That on top of my on-going battle to navigate the uncertainty of what I can cope with from day to day. It's mid February and I've only just checked on dates I should have transferred to my 2024 calendar. #NEIS No end in sight.

12 February
Been trying to get some admin sorted. As soon as I start on one bit, others start toppling over like dominoes. All feels so precarious. So many systems that warn of consequences for not making calls in time, but don't actually answer their phones.
One of them is DWP and I dread getting into trouble.
Christmas interrupted my routine, which was shaky at best, so I feel like I should plan better, but the inertia or transition from not-Christmas to Christmas and back again will always derail me.
That on top of my on-going battle to navigate the uncertainty of what I can cope with from day to day. It's mid February and I've only just checked on dates I should have transferred to my 2024 calendar. #NEIS No end in sight.

12 February
Been trying to get some admin sorted. As soon as I start on one bit, others start toppling over like dominoes. All feels so precarious. So many systems that warn of consequences for not making calls in time, but don't actually answer their phones.
One of them is DWP and I dread getting into trouble.
Christmas interrupted my routine, which was shaky at best, so I feel like I should plan better, but the inertia or transition from not-Christmas to Christmas and back again will always derail me.
That on top of my on-going battle to navigate the uncertainty of what I can cope with from day to day. It's mid February and I've only just checked on dates I should have transferred to my 2024 calendar. #NEIS No end in sight.

12 February
Been trying to get some admin sorted. As soon as I start on one bit, others start toppling over like dominoes. All feels so precarious. So many systems that warn of consequences for not making calls in time, but don't actually answer their phones.
One of them is DWP and I dread getting into trouble.
Christmas interrupted my routine, which was shaky at best, so I feel like I should plan better, but the inertia or transition from not-Christmas to Christmas and back again will always derail me.
That on top of my on-going battle to navigate the uncertainty of what I can cope with from day to day. It's mid February and I've only just checked on dates I should have transferred to my 2024 calendar. #NEIS No end in sight.

One strategy I've found for making it easier/less exhausting to put away clean washing - dedicated clean-washing metal laundry baskets on legs inside my wardrobe, so I can just dump clean clothes/clean sheets straight inside. No sorting, no folding, no lifting lids. The fact that they are on legs saves me having to bend/stoop, and also keeps them clear of any dust on the floor. I use Brabantia Bo Laundry Bin 60 litre.

#Tips
#FatigueTips
#ChronicIllnessTips
#Fatigue
#ChronicIllness
#Spoonie
#SpoonieTips
#Disabled
#DisabledTips
#NEIS
#NEISvoid

One strategy I've found for making it easier/less exhausting to put away clean washing - dedicated clean-washing metal laundry baskets on legs inside my wardrobe, so I can just dump clean clothes/clean sheets straight inside. No sorting, no folding, no lifting lids. The fact that they are on legs saves me having to bend/stoop, and also keeps them clear of any dust on the floor. I use Brabantia Bo Laundry Bin 60 litre.

#Tips
#FatigueTips
#ChronicIllnessTips
#Fatigue
#ChronicIllness
#Spoonie
#SpoonieTips
#Disabled
#DisabledTips
#NEIS
#NEISvoid

One strategy I've found for making it easier/less exhausting to put away clean washing - dedicated clean-washing metal laundry baskets on legs inside my wardrobe, so I can just dump clean clothes/clean sheets straight inside. No sorting, no folding, no lifting lids. The fact that they are on legs saves me having to bend/stoop, and also keeps them clear of any dust on the floor. I use Brabantia Bo Laundry Bin 60 litre.

#Tips
#FatigueTips
#ChronicIllnessTips
#Fatigue
#ChronicIllness
#Spoonie
#SpoonieTips
#Disabled
#DisabledTips
#NEIS
#NEISvoid

One strategy I've found for making it easier/less exhausting to put away clean washing - dedicated clean-washing metal laundry baskets on legs inside my wardrobe, so I can just dump clean clothes/clean sheets straight inside. No sorting, no folding, no lifting lids. The fact that they are on legs saves me having to bend/stoop, and also keeps them clear of any dust on the floor. I use Brabantia Bo Laundry Bin 60 litre.

#Tips
#FatigueTips
#ChronicIllnessTips
#Fatigue
#ChronicIllness
#Spoonie
#SpoonieTips
#Disabled
#DisabledTips
#NEIS
#NEISvoid