elle carnitine 🍉 @elle_carnitine Twitter profile | Pikagi

Pikagi

elle carnitine 🍉

@elle_carnitine

3,957

Followers

970

Following

284

Media

10,081

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she/her

https://t.co/5tvi4vjfce

Joined January 2023

Don't wanna be here? Send us removal request.

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

Long Covid has taken so much from me, but it has not taken what has been most precious to me for the past ten years: more than ever now I live for and thanks to Cam’s love

@predi_cam_ents

camilla

@predi_cam_ents

1 year

Since September my best friend Chloé is bedridden with long Covid & ME/CFS. Today marks almost a month of her biggest relapse to date. She went from being bedridden but awake, present, able to move around to eat, drink and shower, able to lie down on the balcony outside 🧵 1/n

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

My mother refused to get me the HPV vaccine when I was 12 so I printed a huge photo of a cancerous cervix on which I wrote in print THIS IS WHAT YOU WANT FOR ME, and I stuck it on the fridge. I’m pleased to say it was effective 😌

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I’m just finding out that someone claimed my severe disability is a choice and got thousands of likes. Yay 😌

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

You can’t make this up

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

How do we overcome all this misogynistic propaganda? It’s everywhere, from doctors’ offices to social media. For years it was cancer that was allegedly caused by stress, now it’s autoimmune diseases… how do we move past psychosomatic ideology?

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

6 months

I just found out the longevity vampire kicked his fiancée out of their home when she was diagnosed with breast cancer, having become a “net negative”. Never been less surprised in my life

@bryan_johnson

Bryan Johnson /dd

6 months

Death was my only wish for 10 years. Depression had me in an unbreakable choke hold. Giving thanks today that I now feel an insatiable thirst for life. Sending you all🫶🏻

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

This kind of tweet shows just how successful the propaganda has been in recent years that psychiatric incarceration is actually a form of “support”. When the underlying logic is don’t be disabled or be locked up

@AnneNotation

cai

2 months

If you can't heat up a frozen meal because your anxiety is too severe tbh you should probably be in an inpatient situation for a while because your condition is more severe than you think and it's time to get dedicated support

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I just read the words “depression doesn’t subside if you keep giving it what it wants”, which somehow perfectly captures the rhetorical trick by which all accommodations for any chronic illness (mental or not) are refused

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@coffeeteanxiety I think it was probably also a similar thing with mine! So strange how weird people are about communicable diseases that are specifically sexually transmitted

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

Doctor enters my room: Ok so first things first I’m going to need you to take off your mask Me: actually I’m going to keep it on Doctor: euh why? Me: I have long covid and my specialist says long covid gets worse with reinfections, so I’m protecting myself 1/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

Before I was disabled, I’d see disabled people on twitter saying things were ableist and I didn’t always understand. So I followed more disabled accounts, read disability theory, and it had a profound impact on my politics. Just saying that’s also an option

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

Not a single person from my life has asked me what it’s like, what I do now that I live almost entirely lying in the dark. Can I think? What do I think of? They tell me about their trips, work issues, and social lives, but the only question they ask me is “are you better yet”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

Twitter leftists who insist covid is a bourgeois hangup: 45% of ppl who earn <$25k have long covid, vs 15% of those who earn >$200k The struggle for infection control is part of the class struggle, and ignoring covid is participating in the mass disabling of the working class

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

If you support suicide prevention policies for able-bodied people and euthanasia for sick people, you’re supporting eugenics

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

New level of medical gaslighting unlocked: “you have locked yourself into a sickness cycle and are making yourself sick” Sir how exactly do you figure I manifested this illness into existence?!

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

10 months

So 10% of covid infections lead to long covid, recovery rate at two years is 7% (and unlikely to rise after that), 25% of people with long covid can’t work, and people get infected on average twice a year. How long until half the population can’t work?

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

There are literally dozens of people telling me to use a carer to make me food instead of getting takeout. Literally how would that help if the problem is exploitation? What does it change if I pay a carer to make me food or a restaurant+delivery?

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

It’s hard to express just how strongly I despise doctors

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

5 months

This is eugenics in action: deaths only count as bad if they don’t concern those deemed “natural deaths of the weak”, which always includes all deaths due to health complications from engineered epidemics and food, water, meds and healthcare shortage

@lilearthquakess

Jennine

@lilearthquakess

5 months

The Gazans killed by famine are not included in the death toll. Every other tweet I see on my timeline is announcing a different Gazans death due to health complications from lack of food and clean water… Do we have an estimate for how many are killed by famine?

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

It’s always “when will you stop being disabled so we can resume our previous relationship” and never “how can we adapt our relationship to retain the closeness we had now that things have changed”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

5 months

If you’re shocked at the idea of making assisted suicide available to all, but you support it for people with illnesses and disabilities, you’re not actually motivated by a desire for greater autonomy, but by a eugenicist impulse for the death of disabled people

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

Doctor: You know, if you don’t want covid you should stay away from hospitals Me: well yeah, but I had severe crushing chest pain for ten hours Doctor: you probably should have stayed home and waited for it to pass Me: that’s not what the 911 operator said when they sent me here

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

[that’s not really the why of it but I need this doctor not to kill me and this was the answer I thought would be most acceptable to her] Doctor: ok but I’ve seen people with long covid and they don’t wear masks. So you’re a hypochondriac actually 2/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

10 months

Very hard to relate to those who think the first three years of the pandemic were bad because they couldn’t go to bars for a while, as opposed to because 25 million people died, 400 million were disabled, and many more continue to be unable to access public space

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

Dr: anyway, I’m going to need you to take off all your clothes including bra, trousers and socks. You can keep your knickers Me: Er why? Dr: do you think you know how to do my job better than I do? Me: no but it’s my body so I have a right to know what you’re going to do w it 4/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

I call the nurse to ask if Cam can come wait for blood results in my room with me. The nurse goes to ask the doctor and the doctor says no. So Cam has to wait outside the emergency dept and I’m here alone in my room, obviously as punishment for having LC/being sick/wearing a mask

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

I should add that they put me in the middle of the corridor while I am NAKED with just knickers on and a white sheet the nurse brought me because she took pity on me

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

The reason we see tweets inciting people to strength-train and not to learn medical, nursing, caring, and otherwise life-sustaining skills is because these people’s priority is to see themselves as Rambo, and too bad if we die in the process

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

They’ve escalated the punishment: they took me out of my private room and put me in the corridor where everyone can breathe on me (there are three empty rooms, and two empty slots behind curtains that I can see)

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

“Act like someone without depression and your depression will subside”, “act like someone without ME and your ME will subside”, “act like someone without allergies and your allergies will subside”… or in other words “act abled or feel the burn of my abjection”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

5 months

After my mother gave me a massive permanent baseline decrease, endangered my relationship with the one doctor on who my survival depends, and didn’t send me a single text for months, she called my illness “chronic fatigue syndrome” and that did it: I officially went no contact

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

They’ve realised not calling me an ambulance means they’re going to have to keep me until a private one arrives, so suddenly they developed the will to call themselves and one should come in half an hour

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

They’re discharging me and I absolutely cannot sit so I need an ambulance to go home, and the hospital is legally obliged to get me one. Apparently they called the local ambulances to say I’m not actually bedridden, so obviously they weren’t coming. We had to call them ourselves

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

6 months

Apparently I am a legend at my local pharmacy. I get prescribed very strange medications, like old H2 blockers that haven’t been popular since the 70s, allergy treatments that only exist in eye drops and need to be compounded in capsules for ingestion…

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

Dr: I need to touch your calves to check for a blood clot [at this stage I don’t want to argue anymore so I use all the strength I have in my body to remove my clothes. The doctor palpates, listens to my heart, and leaves the room without a word] 5/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

I’m just finding out that since it wasn’t booked by the hospital, I’m going to have to pay for the ambulance trip myself

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I spent so many years blaming my chronic illnesses on my own personality and what I was told was my inability to handle stress. It made me turn inwards and against myself. It took me becoming really, really sick to find our community and realise it was all bullshit

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@EJXD2 I don’t get takeouts for lots of reasons, but I know people with MCAS who do. You can get lots of things from takeouts that are fresh so low histamine, whereas many frozen meals are high histamine

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

5 months

I’m gobsmacked by the number of leftists who think doctors don’t regularly know less about illnesses than the people who have them. It shows not only that they dont listen to disabled people, but also that they have no analysis of how knowledge is linked to power and interests

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

When people point to parallels between CDC abandonment of people sucesptible to disability and death from HIV/AIDS and from Covid & Long Covid, some abled queers will say that the situation is profoundly different (read: much less bad) because the former was fulled by queerphobia

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

…and apparently going to have to wait seven hours in the loud bright entrance corridor

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

7 months

“Immunocompromised people should just stay home” are you bringing me fresh groceries, my meds, and giving me enough money to live? are you building a covid-free hospital in my house for my medical care? are you duplicating my social circle so one version can live here with me?

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I’m seeing more people calling it “neurospicy” and it feels like they’re trying to distance themselves from the fact that neurodivergence is disabling “I’m cool, quirky, and interesting” and not “we need collective action to create a society in which we can be enfranchised”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

They served lunch to the two people I can see but not to me

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

We say some of us cannot exercise and some people hear we are “lifeless, lazy, and leeches”. There is a word for that ideology and it’s not “leftist”

@queersocialism

josh!

@queersocialism

3 months

how is it that the current era of “disability activism” cannot imagine disabled people outside of the imaginary of being perpetually lifeless, sick, lazy, leeches to social struggles, incapable of doing anything (especially if it requires sacrifice)? i find it fascinating

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

@SalamonSMD Obviously doctors (and everyone else) should wear fit tested respirators at all times but it’s not always a good idea to antagonise them because, as today shows, they retaliate

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

10 months

Someone told me they’re sure I’ll spontaneously recover anytime now, since my body is “resilient and naturally strong”. It encoded a fascistic form of ableism, which divides people between strong and weak, where the former are invulnerable and the latter are disposable 1/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

7 months

People I was extremely close to, talked to and saw every day before getting sick, refused to come and help feed me and otherwise keep me alive. But a more distant friend I really valued but didn’t know well heard what happened and is coming to help for three weeks. I’m so happy

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

5 months

This “blame governments not individuals” rhetoric about covid among leftists is really starting to get on my nerves. Of course I blame governments. And part of what that means is being pissed at my supposed comrades who not only let it happen but are actively participating

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

I’ve made it home. Body giving out

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

One of the common responses to disabled people saying they sometimes rely on food delivery to feed themselves is “if you’re actually that sick you need more medical care” This encodes several ableist points: 1) disbelief of disabled people (*if* you’re *really* disabled)

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@cancelproof I’m so sorry to hear that 💔

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I’ve witnessed it several times: someone becomes seriously disabled and the people around them start to consider that person “fucked” or “ruined”, like they’ve entered a new category of non-human—even their suffering is couched in terms of what it does to others

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

What’s ableist is to tell people, without knowing anything about POTS or MCAS, that it couldn’t be better for them to eat restaurant food with lots of fat and salt in it. For some people, like myself, high fat high sodium diets are an important part of chronic illness management

@crulge

🇵🇸 timothy 🍉 faust

2 months

cool new frontier in discourse: it's ableist to say "damn restaurant food is unhealthy"

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

7 months

Love to be told by an abled friend that the 27 million covid deaths are not as bad as they otherwise would be because it’s mostly disabled and old people

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

I became bedbound at 26, and I don’t know how long I’ve got still able to communicate, between this aspiration pneumonia scare and the ever present fear of reinfection. I wanted to live so much longer, so much longer

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

Periodic reminder that, contrary to a widespread myth, heart attacks present similarly in all genders. The reason they’re underdiagnosed in women isn’t that we have an “atypical” presentation but that doctors do not take our medical problems seriously

Tweet card media

No difference in key heart attack symptoms between men and women

Women who have heart attacks experience the same key symptoms as men, quashing one of the reasons given for women receiving unequal care.

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

When I’m relatively better, I imagine a parallel world where I’m not (as) sick, and I can interact, move around, do things. At first it was populated by people l knew, but increasingly I am making up people to be close with because my real friends have abandoned me

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I think the left having essentially abandoned any attempt at fighting misogyny and patriarchy (under the guise of “feminism is a liberal ideology”), together with their vile ableism, has meant that this bullshit could go unchallenged

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

7 months

My mum wrote me a letter: apparently my illness is caused by my unconscious deciding to punish her for not having noticed that I had stopped breathing and turned blue after birth, and we should therefore reenact my birth under hypnosis, as a cure

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

What I’m taking away from this discourse is that most self-professed leftists have no idea of what survival requires for anyone who isn’t a healthy abled adult with no dependants. We’re definitely not getting a new world from these people

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@acanopyofstars You’re exactly right. Moving my thumbs is ok, moving my arms is hard, moving my whole body is impossible. Makes sense because thumbs are light, arms are heavy, bodies are very heavy. But to them it’s all beneath the threashold of what counts as an activity

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@MalakaGharib This is a vile vile take. The fact that you’re pressuring your partner to put his physical integrity on the line and calling that “compromise” is… sure something

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elle carnitine 🍉

@elle_carnitine

11 months

Those posts where people express immense gratitude to their wonderful doctors are so bewildering to me. In 27 years of ill health I have simply never encountered a doctor who actually cared for my health

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@wholelife180 @EJXD2 I thought by “frozen meals” people meant meals that are bought frozen? My carer buys fresh vegetables and freezes them so I have no problem with freezing as such but many frozen ready-meals are histamine nightmares

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@totidyle It’s so so weird?! I remember there were so many conspiracy theories going around at the time about it being “new and untested” and not like other vaccines… so glad you finally got it!

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

Incidentally it was life-saving when a covid infection disabled me. So since none of you are protecting yourselves against reinfections, perhaps it wouldn’t be the worst idea to plan in advance for when you inevitably develop long covid (and ironically become unable to exercise)

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

5 months

I was prepared for many cases of men showing little to no interest in the new devastating illnesses of their woman partners, but not for how many of them continue to incessantly sexualise the bodies of their partners, as these bodies become sites of relentless suffering and pain

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I learnt so much from Vicky Osterweil in 2020, and I saw she did an interview about the refusal to forget or deny the various stages of the pandemic. It’s the first time someone I admired from the before times has remained anti-covid and I can’t tell you what it means

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

I see we’re doing “i’m a leftist and i think it’s authoritarian to ask me not to kill or further disable you” discourse again and i do NOT like it

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

“They want us to forget that, during the lockdowns, global carbon emissions dropped 6%, that bird song returned, that it was so obvious that the world was doing better "nature is healing" became a meme.”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

The ableists are asserting again and again that severe disabilities of the kind that might impact one’s capacity to prepare quick meals are rare. But what happens is that they make public space inaccessible to us, so they never see us, so they conclude we basically don’t exist

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

9 months

Little by little, I’ve been confronting or at least have spoken up to friends who’ve provided or offered no practical help, haven’t been meaningfully present emotionally, and who continue to spread covid. And oh boy some of the reactions!

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

4 months

Whenever I tell an abled person that several close friends abandoned me when I became disabled, they automatically assume that I’m exaggerating and/or that it’s actually my fault. And I’d shrug it off if I didn’t actually feel a deep shame at having been abandoned like that

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

11 days

If I could tell myself four years ago that 30 million people would die, that I would become disabled to the point of being absolutely unable to sit, and that the vast majority of people incl most of my friends would carry on as if none of that happened

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

4 months

@dutchlauren Have a beautiful last few hours ♥️

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

I got a text from an old friend I hadn’t spoken to in years asking me how I was. I wrote back and in that message said verbatim “I caught covid and became disabled by it” then described the illness a bit. His response: “I hope you see some improvement soon!”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

Covid denialism in the global north has been fuelled by the neo-colonial eradication of most infectious diseases in the imperial core and their attendant maintenance in the global south, which has cemented the association of whiteness with freedom from serious infectious disease

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

Given the fact that the notion of hysteria still pervades our culture and health institutions, I think we should hold back from talking about stress when we talk about the social determinants of health, until we have a good sense of how psychosomatic ideology operates

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

6 months

It’s felt surreal witnessing not only the much-discussed misinformation about covid, but also the complete lack of education/information. I can’t help but think that if there’d been a massive education campaign about all aspects of covid (how it spreads, how N95s work,

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

A doctor insulted me, forced me to strip, forbade the presence of my friend, and put me on display, naked, in the middle of the entrance corridor to maximise my covid exposure and humiliation. I do not care that there are (extremely rare) competent and respectful doctors 1/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

7 months

“Patients did not improve with our psychosomatic therapy. We conclude that psychosomatic therapy could be an important treatment for these patients.” HOW DOES THIS PASS PEER REVIEW. HOW

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

There is a lot that’s very different between the two epidemics, and indeed institutional and systemic covid denialism isn’t fuelled by queerphobia. But it is fuelled by ableism, and the overall structure of the ideology behind both is similar: “who cares if *they* die”

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

It’s so eerie seeing abled leftists mock us for being fearmongerers and conspiracy theorists when we repeatedly grieve people from our community, and live every day with the knowledge that any of us could deteriorate and die any moment. We really do live in different worlds

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

@chaitrovert Yeah, I think that’s what’s going on. The possibility of being severely disabled is so scary they have to imagine it’s a choice ie they could choose their way out of it

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

I often think about a tweet @SabineHermisson wrote, wondering what it’s like for Mila. I don’t know if people in my life spend any time wondering that. In any case they don’t ask me

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

So many people are telling me to complain and I know people mean well but I’d like to explain why that’s not the right response 1) As the thread shows, doctors retaliate. I am very sick and depend on this hospital for my survival. I simply cannot afford to antagonise them

@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

Doctor enters my room: Ok so first things first I’m going to need you to take off your mask Me: actually I’m going to keep it on Doctor: euh why? Me: I have long covid and my specialist says long covid gets worse with reinfections, so I’m protecting myself 1/

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

6 months

Every time Camilla sends a new woman they ask “so… are you her? Are you Chloé??” They even asked Cam’s mum this question 😭 Can’t wait to be better enough to be able to introduce myself

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 month

Just got a message from a distant relative saying she heard what happened to me but she “still loves me” and “doesn’t think any less of me” and she “still sees me the same way she used to”. Nothing like benevolent ableism to make me feel bad about myself

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

I’m genuinely puzzled about how intense medical abuse and neglect of ME/CFS is. The lack of biomarker plays a role, but many illnesses lack a biomarker and patients are not subject to such (e.g. Alzheimer’s is diagnosed based on specific symptoms + exclusion of other causes)

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

I haven’t been able to see my stuff since I became bedbound far away from where I lived, eighteen months ago. A friend went to check on them and my beloved shoes are… in this state

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

I am just venturing a guess here but could it perhaps be that carer work is feminine-coded and restaurant/delivery work is masculine coded, and you people don’t mind exploitation as long as it’s women being exploited?

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

3 months

My friend was trying to refer to an elastomeric respirator as opposed to a disposable mask but didn’t know the term and “permanent strap on” is what came out

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

They want us to remember the fear and isolation, but they want us to forget that everyone quit their jobs in 2021 and it drove wages up; that childhood poverty dropped; that people fought the police and were winning

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

2) assumption that we’re not actually constantly fighting for more support, and that food delivery isn’t the best we can do *given* our abandonment by state and community 3) insinuation (or sometimes outright assertion) that disabled people should be instituonalised

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

1 year

When I got sick, I was teaching a university course on the philosophy of illness and medicine. I was teaching this course for the third time, and in the session on diagnosis, we discussed ME/CFS. (1/n)

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

In the past couple of days, I received FOUR “are you better yet” messages from people I’ve previously explained the concept of a chronic illness to, and honestly at this stage I feel like just sending a dictionary definition

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

6 months

There is a new questionnaire to evaluate the functional capacity of people with ME: the FUNCAP questionnaire. The OMF are going to use it in their upcoming LIFT trial (for Mestinon and LDN), as one of the ways to measure drug efficacy. And, it’s fantastic! A thread 🧵

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

6 months

I tested positive for covid on the morning of the 24th. At first I was normal-sick (high fever, headache, cough), and then suddenly I had severe ME. I knew it was something else, and I knew it was bad

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

4 months

Whenever disabled people point out we don’t have access to e.g. infection-free healthcare, or here, actual food, abled people love to tell us off for blaming workers instead of the state. It’s really frustrating bc we spend our lives actually blaming the state for all this

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@elle_carnitine

elle carnitine 🍉

@elle_carnitine

2 months

Cam just sent me a photo of our balcony and GOD do I wish I could get out. Fuck every single person perpetuating the pandemic that made me unable to feel the wind on my skin

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