For most people, getting Covid was a disruption that passed. But for the millions who developed
#LongCovid
, that disruption has been persistent – for years.
After 32 months of living with this complex chronic illness, here are some reflections...🧵
#LongCovid
is the most glaring evidence that Covid is *not* mild, that the pandemic is *not* over, that it's not possible to go back to *normal*. Denying it will not alter reality. But the longer it's ignored and negated, the greater will be the harm to people and nations.
For every person sharing their
#LongCovid
story, there are thousands silent for fear of discrimination.
For every
#LongCovid
advocate, there are thousands too ill to raise their voice.
For every doctor working to treat
#LongCovid
, there are thousands who gaslight patients.
It's a year since I got Covid; I'm still not better.
I'm one of those ill with
#LongCovid
.
The ones who fall into the abyss between *recovered* and *dead*.
The ones who—though living—have lost their former lives.
The ones waiting for a cure.
Some reflections on the past year 🧵
1. The belief that if you fall ill, the healthcare system will help you recover – doesn't hold true for people with complex or invisible illnesses.
Dismissal, mistreatment, and denial of health insurance are often the norm.
2. In the absence of adequate support systems, the burden of survival, of searching for treatments, and of advocating for cures lies mostly with patients of complex illness. This is most unfair.
20. Twitter, for all its flaws, is a lifeline for people with chronic illness and disability. This community has helped me survive; given me advice that doctors couldn't, information that Google couldn’t, and understanding that friends couldn't. I'm so grateful. 🩵
3. Diseases are non-hierarchical but false narratives of hierarchy in the medical system have led to the inexplicable neglect of chronic illnesses like Myalgic Encephalomyelitis (
#MEcfs
) &
#LongLyme
4. Discrimination on the basis of illness & disability is unethical but rampant.
5. To make the *human right to health* a reality, it's important to ensure that no one is left behind and no illness is left unresearched and uncured. *Medical gaslighting* should be considered a human rights violation.
8. Chronic illness distorts the notion of time. Life moves both in slow motion and fast-forward mode. Days are painfully slow, but months speed by. We're immobile, but our bodies change rapidly. We’re stuck in a tedious time loop while the world races ahead.
7. Severe chronic illness is a slippery space between recovery and death, biology and biomarkers, hope and despair; between irony and paradox. It robs you of spontaneity but also of the ability to plan. It makes you simultaneously long for life’s miracles and death’s relief.
The deafening silence on
#LongCovid
in public health messaging—in almost every country—indicates how short-sighted governments are in assessing risk and damage; and, how far the world is from protecting people's lives and ending this pandemic.
10. For the chronically ill, surviving is herculean. When abled people say, 'be strong,' they don't realize the inordinate amount of strength it takes us to make it through each day and night, to stay alive.
6. *Medical injustice* is real. While the world is blessed with some amazing doctors, many care more about their egos than patients' well-being.
The Hippocratic Oath seems to be dying. Even then, *do no harm* is a basic principle of medicine that includes saying, 'I don't know.'
9. Complex chronic illness has layers of inexpressible agony and loss. It steals so much from us: Time; sleep; simple pleasures of life; careers, income, independence; freedom to do/eat what we want; the ability to work, travel, attend family events, and be there for loved ones.
13. Human worth is perceived by employers as *productivity* and by society as *utility*. When you're chronically ill or disabled and can't contribute as expected—whether in jobs or in relationships—you're discarded. Such abandonment of people when they most need support is cruel.
11. *Ableism* has become a major blight of our times, even among the allegedly progressive. Often, it's so internalized that people don't even recognize it in themselves. Ableism is discriminatory and damaging; it hurts and harms millions. It needs to end.
12. The loss of human life can never be condoned by the term *underlying comorbidity*. And the death of medically vulnerable people cannot be treated as the *collateral damage* of society's *normality*.
All lives matter and must be protected.
18. Much of what we think is important in life, really isn't. If I could go back to my pre-Covid life, I'd work less, take more holidays, dance harder, walk farther, listen more to my body, and spend way more time with loved ones, especially the youngest and oldest.
16. Chronic illness gifts you with *super-powered glasses* to see through relationships and sift the genuine from the superficial.
Incredulously, there's an inverse relationship between the duration of illness and the number of people who care.
19. The growing acceptance of *patient-led research* and the recognition of *patients as experts* in their illness will be transformational for the future of medicine and healthcare.
@patientled
15. Denial doesn’t end a pandemic. The price of such *ostrich-ization* is being paid by millions – with their lives and livelihoods, their health and homes.
14. The return to a delusional *normal*—under the guise of *economic growth*—could prove to be not only socially calamitous but also economically catastrophic.
600 days of excruciating pain, extreme fatigue, deep malaise.
24x7
Not a day of relief.
Mostly in bed.
Too ill to work.
This is
#LongCovid
Please don't say Covid is over.
It's not.
Not for me.
Not for 150 million with LongCovid.
Not for high-risk people.
Not for anyone.
Not yet.
17. Living with a multi-symptomatic chronic illness teaches us that nothing, nothing is in our control except the decision to embrace hope: The hope of recovery, a cure, a new life… Hope is all we have, so we cling to it, even in the darkest hours of despair.
*️⃣ Living with a chronic illness is extremely isolating.
↔️ A wide chasm of *unrelatability* exists between the healthy and the unwell, which deepens over time.
🔗Most people don't want to deal with the *inconvenience* of your illness. Only those who truly care, stick with you.
🔰 Governments know the horrors of
#LongCovid
but choose to exclude it from public health messaging. Acknowledging it would require commitments they're unwilling to make. But they'll have to take action soon, as the socio-economic costs of ignoring
#LongCovid
will be explosive.
For every
#LongCovid
patient trying to work, hundreds of thousands have lost their jobs.
For every person getting disability benefits for
#LongCovid
, hundreds of thousands are not.
Hopefully 2023 brings more support and a cure for the ~150 million people ill with
#LongCovid
.
⚠️ We're all tired but
#CovidIsNotOver
. It's lethal.
⭕
#LongCovid
is Devastating. Debilitating. Unbelievably life-altering.
Affects, on average, 1 in 5 infected people. You can get it even if fully vaccinated.
😷 Don't risk it.
#WearAMask
. Be safe. Protect the vulnerable.
⚕ Doctors don't always know what's wrong. But most won't admit it. *Medical gaslighting* is more common and harmful than imaginable.
❎ Dismissal of
#LongCovid
is condemnable.
▶️ A compassionate well-informed doctor—who keeps up with medical research—is what each one needs.
⏳ What's urgently needed:
1) Intensified, coordinated, & well-funded biomedical research to develop cures for
#LongCovid
&
#MEcfs
2) Policy to highlight, not hide, the danger of Long Covid
3) Expanded health insurance coverage
4) Disability benefits
5) Data accuracy & disclosure
💥
#LongCovid
is brutal. Didn't know such severe pain, fatigue, complications could exist in the human body. That too simultaneously, relentlessly, for so long.
Each day's a struggle, of recalibrating life; of facing myriad unfathomable symptoms, not knowing what may strike when.
The more I read this poem,
The more it hurts 💔
The cruel irony is that now
All hospitals have been destroyed
There is no gauze in Gaza to treat wounds
And no gauze will ever be able to heal
Those deep, gaping, wrenching wounds.
☢ The toxic capitalist work culture—that permeates most organizations—ascribes human value only to *productivity*. Thus, those with serious illness/disability are either forced to work to survive or if they can't work, lose jobs and income. Most have no access to benefits.
💔
#LongCovid
brings unimaginable loss - of health, work, income, identity, ability, relationships... Each loss brings grief tinged with disbelief.
⤵️
#LongCovid
is draining: physically, mentally, emotionally, financially... It's pushing many into poverty and homelessness.
Housebound with
#LongCovid
, I can only travel to places in my past.
Here's an image from Ladakh, India, to wish you safe holidays & a joyous New Year!
May we see more love, light, compassion, & peace in 2023. For those with chronic illness, I hope it brings relief & recovery.
🙏 Forever grateful to those who held me over this agonizing year. Heartfelt thanks to the amazing people in the
#LongCovid
/
#MEcfs
/ chronic illness community. Sad that millions of us are suffering (many for 2+ years). But I'm hopeful we'll see the light of recovery.💛
@pamelarbishop
So true.
Another way to explain
#LivingWithLongCovid
: Imagine your body is a mobile phone whose battery only charges to 20% a day. Each activity—eating, bathing, talking, reading—depletes it rapidly. If it reaches zero, the battery takes several days to recharge...
#LongCovid
#ME
People not wearing masks, even at human rights meetings/events, reveals how deeply entrenched ableism is in society.
And it's so ironic. Because ableism violates human rights.
Wearing a mask protects everyone and saves lives.
😷 = ❤️
#EndAbleism
#CovidIsNotOver
What an incredibly powerful art installation in recognition of the
#MillionsMissing
from their lives because of Myalgic Encephalomyelitis (ME).
Heartbreaking,
breathtaking,
gut-wrenching,
all at once. 💔
Kudos
@MEActNet
This is what every academic should be speaking out against.
This is what every institution of learning should be protesting.
This is what American universities should be rallying against.
The eerie silence on this systematic *educide* is disconcerting.
The Israeli military just blew up the University of Palestine in Gaza City with 315 mines. All the universities in Gaza have been damaged or destroyed. We need a full academic boycott.
Chronicles of Deaths Untold (by
@BDUTT
).
The shroud of collective grief & loss weighs heavily on us. Recording these tragic stories & deaths is so important - to build national memory, to defy forgetting, to ensure we never face such horrors again.
We owe it to each one we lost.
Vikas Chauhan, an autodriver, was driven in his auto by his wife & friends to 6 hospitals when he got COVID, he was turned away by all & died at his doorstep. Without a test & hospital certificate, he is among India's Uncounted. His parents died in the Bhopal Gas Leak. My report
Post-vaccine illness/death is real. But there's an unwillingness to acknowledge & address it. My
#LongCovid
got much worse after vax. I'm still pro-vax. But we need more research, transparency & disclosure from govt & pharmaceutical cos.
#VaxInjury
Important piece by
@tabassum_b
Adverse event reporting is a crucial part of the vaccination programme. It prepares to tackle treatment for future cases. India has vastly underreported this figure, about eight to ten times lower than several developed countries.
#HumanRights
are indivisible & interrelated. But there's still a bias toward discussing civil & political rights, even in human rights spaces; also on social media. Why? Violations of ESC rights - health, housing, food, work, water, sanitation... are as serious & take many lives.
@ahandvanish
Congratulations to everyone involved in this hugely important study! Truly groundbreaking work being done with the involvement of patients.
👇🏽
19. The growing acceptance of *patient-led research* and the recognition of *patients as experts* in their illness will be transformational for the future of medicine and healthcare.
@patientled
Yes, thank you!
No one with
#LongCovid
, in any country, should be struggling to get their illness taken seriously.
As
@zalaly
rightly said, "People with Long Covid need treatments yesterday."
We need more funding for research to
#TreatLongCovid
.
Far too many people suffering from long COVID have struggled to get their symptoms taken seriously – by the medical community, by the media, and by Congress. That should not be happening in the United States of America. It is time for us to act to address this crisis.
Brazil. Ethiopia. India. Kenya. Palestine. Somalia. South Africa. Spain... States where evictions have been reported during the pandemic, in violation of human rights law.
Globally, forced evictions need to end. States should act now. It's an issue of life & death.
#NoEvictions
#ME
is a deeply disabling but grossly neglected illness affecting millions.
✴️~75% can't work
🛌 25% are home/bedbound
🔅~50%
#LongCovid
patients meet ME criteria
On
#WorldMEDay
, we request governments & medical practitioners to promote awareness, research, funding & support.
After 17 years at
@HLRN_India
, with a heavy heart, I'm stepping down as Director due to health issues. My deep gratitude to all who shared this incredible journey with me: the great team, partners, Board, donors... I'll miss being at
#HLRN
but it will always be a part of me 💙
Landmark judgment from Supreme Court of Kenya! Upholds international law & UN standards on evictions. Asserts
#Right2Housing
is not conditional on land title. Recognizes right to live on public land.
@leilanifarha
@adequatehousing
This solidarity and unity is heartwarmingly beautiful.🙏🏼
Chronic illness and disability communities should also be in solidarity with Palestine. Every day, thousands of people are being brutally disabled, injured, starved, and rendered ill. It is a
#DisabilityJustice
issue.
The disability community *should* already be in solidarity w/ folks w/
#LongCOVID
. This is in line w/ disability justice principles of cross-disability solidarity & collective liberation
We can build power together
#PodSaveJon
#LongCovid
is one of the world's greatest *mass-disabling* crises.
📈 It's aggravated by denialism and ableism. By harmful *back-to-normal* & *live-with-Covid* dogmas; revocation of mask mandates; and, faulty health policies.
⚠️ It's wrecking lives. But most don't care.
🔰 Governments know the horrors of
#LongCovid
but choose to exclude it from public health messaging. Acknowledging it would require commitments they're unwilling to make. But they'll have to take action soon, as the socio-economic costs of ignoring
#LongCovid
will be explosive.
Today is
#WorldSleepDay
. Let's not forget that millions of people living in homelessness around the world are deprived of this basic human need. Lack of a home + fear, violence, extreme weather, law-enforcement officials... keep them awake, night after night...
#EndHomelessness
In an amazing day of collective action, residents threatened by forced eviction in Delhi come together to claim their rights and demand justice. Call on the state to save their homes and lives. Receive overwhelming support from across India.
#NoForcedEvictions
@delhievictions
@norabf
@thrasherxy
Unbelievable. Imagine the outcry if any university in the global north had been destroyed like this. The double standards are sickening.
This is what every academic should be speaking out against.
This is what every institution of learning should be protesting.
This is what American universities should be rallying against.
The eerie silence on this systematic *educide* is disconcerting.
May 2024 bring peace, humanity, love, light, compassion, and the end of suffering for everyone, everywhere...
May violence and war end.
May grieving hearts be healed.
May all illnesses be cured.
And may we see the sun emerge from behind the clouds of darkness.
Just because the media's not covering it, doesn't mean it's over.
Just because governments aren't warning us, doesn't mean it's over.
Just because no one's testing any more, doesn't mean it's over.
#CovidIsNotOver
: People are still falling ill & dying, even months after Covid.
It's 1000 days since
@WHO
declared Covid a pandemic.
Sadly, it's *not* over yet.
The virus is still mutating, disabling, killing.
If the priority shifts from personal interest to public health and from reducing market risk to reducing human risk, the pandemic may end sooner.
"Shelter me in the warmth of your gaze,
Take me, a panel of almond wood, in the cottage of sorrows
Take me, a verse from the book of my tragedy
Take me, a plaything or a stone from the house
So that our next generation may recall
The path of return to our home."
~ Mahmoud Darwish
For the International Day of Solidarity with the Palestinian People, our team at
@tri_continental
made a beautiful picture of Darwish to go with the newsletter, . Thanks
@t_ings
.
@Palestine_UN
@UNRWA
Important article discussing what those of us with
#LongCovid
in low - and middle-income nations face: Paucity of data, denialism, low level of public awareness, zero public health warning, inadequate medical support, and no health insurance coverage or disability benefits.
Kudos to
@PARInetwork
for the sustained high-quality reporting. Gratitude for bringing these stories to the world. And for continuously giving voice to millions who are largely ignored by the mainstream.
It took a pandemic for the media to pay attention to rural Indians. It need not be this way. We at PARI wish to change that- and we will. We can do it without corporations and governments. We can’t do it without you.
Support our work:
@fearnley_k
Thank you so much! I'm glad to know this resonated with you and others... Makes the effort and energy depletion worthwhile. Appreciate all you do. Solidarity and healing wishes. 🌻💛
For every
#LongCovid
patient sounding alarms about this brutal illness, there are thousands ignoring us.
For every doctor following
#LongCovid
research, there are thousands still saying it's "mysterious."
For every person standing by those with
#LongCovid
, thousands sever ties.
15 March is
#LongCovidAwarenessDay
Why do we need this day?
Because it's Year 4 of the pandemic, >100 mn people are suffering from
#LongCovid
, & still so many—even doctors—know so little about it.
Not headline news anymore, but
#LongCovid
is the devastating *shadow pandemic*.
@loscharlos
Much gratitude to all the amazing
#LongCovid
advocates in the US. You rock, big time! Sending love, luck, and appreciation from India. All power to all of you 👏🏽✊🏼🫶🏽
A new tremor is threatening to shake minority communities as protests over racial injustice sweep the country: A wave of evictions as a federal moratorium on kicking people out of their rental units expires
I've written this short fictional piece, as a tribute to Shireen Abu Akleh (and other Palestinians murdered by the occupying forces).
May the voices for justice and peace prevail. May we see the end of the occupation. May we read and write those stories...
🧵[1/3]
1. The belief that if you fall ill, the healthcare system will help you recover – doesn't hold true for people with complex or invisible illnesses.
Dismissal, mistreatment, and denial of health insurance are often the norm.
Market & political propaganda has posited Covid as something *mild* to *live with* even when it's still killing thousands of people every week, and has disabled & destroyed the lives of millions.
This theatre of denial has created a grave human tragedy with zero accountability.
This is what every academic should be speaking out against.
This is what every institution of learning should be protesting.
This is what American universities should be rallying against.
The eerie silence on this systematic *educide* is disconcerting.
6. *Medical injustice* is real. While the world is blessed with some amazing doctors, many care more about their egos than patients' well-being.
The Hippocratic Oath seems to be dying. Even then, *do no harm* is a basic principle of medicine that includes saying, 'I don't know.'
Flashback, May 2019: Wonderful memory of the expert meeting that contributed to the final report of
@leilanifarha
as UN Rapporteur.
These excellent Guidelines for Implementation of
#Right2Housing
need to be disseminated and incorporated in state policy:
For every person acting to protect public health, thousands refuse to care.
For every employer supporting those who can't work due to chronic illness, thousands aren't.
For every person enduring the trials of this pandemic, thousands are pretending it's over.
This is not okay.
Two years of
#LongCovid
for me today. And every word in this thread is still true.
Still waiting for my health pendulum to shift to better; it's only been swinging between bad & worse.
Solidarity hugs for everyone in this predicament. Am holding the hope of recovery for us all.
It's a year since I got Covid; I'm still not better.
I'm one of those ill with
#LongCovid
.
The ones who fall into the abyss between *recovered* and *dead*.
The ones who—though living—have lost their former lives.
The ones waiting for a cure.
Some reflections on the past year 🧵
Delhi is reeling under a severe
#heatwave
. Advisory to stay indoors. But where do >100,000 people living on the streets go? The ground is so hot, torturous to sit/sleep on it.
@ArvindKejriwal
please provide:
- Safe housing for all
- *Cooling centres* with water & relief services
#LongCovid
is keeping children out of school, students out of university, & millions out of work.
Low awareness, stigma, & lack of medical & financial support make life much harder for people with
#LongCovid
.
We need help. The burden of survival shouldn't only be on patients.
Been ill with
#LongCovid
for 1.5 years now. 550 days of unrelenting pain, crushing fatigue, PEM++...
#LivingWithLongCovid
≈ *Losing your life without dying.*
Got Covid despite staying home & being super careful. It's that lethal. Shudder to see people unmasking. Don't risk it.
It's a year since I got Covid; I'm still not better.
I'm one of those ill with
#LongCovid
.
The ones who fall into the abyss between *recovered* and *dead*.
The ones who—though living—have lost their former lives.
The ones waiting for a cure.
Some reflections on the past year 🧵
@PutrinoLab
Thank you so much for speaking out, for speaking for us, for working to find cures for us, for all you do for the chronic illness community. We appreciate you sooo much! 🙏🏼🩵
Killing >3600 children is not self-defence
Blasting hospitals & schools is not self-defence
Forcing millions from their homes & then bombing them is not self-defence
Cutting electricity & fuel is not self-defence
Murdering journalists is not self-defence
#EndGazaGenocide
Commemorating 20 years of
@HLRN_India
and the
@UN
Housing Rapporteur Mandate is an incredibly special moment. I'm deeply honoured to host this event with all UN
#Right2Housing
Rapporteurs in history!
Please register now and join us tomorrow:
#HLRN20
I couldn't have asked for a better place to work at, or a better team to work with. Thank you, everyone at
#HLRN
, for your love, support, commitment, and contribution. 💜
#HLRN
expresses its deepest gratitude to
@shivani_chdhry
for her immense contribution to the organization. We will continue to work on her vision to strengthen
#HumanRights
in India, particularly of those who are most marginalized. We wish her good health & a speedy recovery!
In an environmental pollution case, India's Supreme Court orders removal of 48,000 homes of low-income communities in Delhi. Without an adequate rehousing plan, ~230,000 people could be rendered homeless during the pandemic.
@TRF_Stories
@adequatehousing