Karishma, a 32-year-old professional who works in the mental health sector, used to be a perfectly healthy cardio-loving, yoga-doing, gym-going person.
Used to be. She used to lead a full life and would look forward to doing new things each day.
That was before life dealt her the wrong deck of cards. Karishma contracted COVID twice in 2021 and 2023. However, the second time around, Karishma was diagnosed with long COVID, a condition that has turned her life upside down since.
From living independently in Mumbai, Karishma was forced to move back in with her parents because, she says, "I could not function on my own."
Karishma is not the only one to have had a debilitating experience with long COVID.
According to a 2023 study published in the Journal of Medical Virology, 8.2 percent people who contracted COVID also suffer from long COVID.
It’s been four years since the pandemic became the ‘new normal’ for most of us. But for some, COVID and long COVID have changed the very meaning of the word (and the world).
FIT spoke to four long COVID patients to understand what life is like for them.
From New Normal to No Sense of Normalcy: How Life Changes With Long COVID
The United States Centers for Disease Control defines long COVID as “signs, symptoms, and conditions that continue or develop after acute COVID-19 infection.”
For Karishma, these symptoms started with fatigue, cough, weight loss, vitamin deficiency, and losing her sense of taste and smell.
Soon, she also started suffering from breathlessness, Postural Orthostatic Tachycardia Syndrome (POTS), memory issues, eye issues, and viral reactivation.
“There’s not a single organ in my body that long COVID hasn’t affected. I am one step away from wearing diapers. I am on heart failure medication, on blood thinners, on other medications – none of which work. I’m so extremely susceptible to infections that I’ve had seven reinfections since being diagnosed.”Karishma, 32
Sourya Dash, a 40-year-old corporate employee, based in Delhi-NCR, has had a similar experience. He too was diagnosed with POTS in 2022.
He tells FIT, “After COVID, slowly, I realised that every time I stood up or moved a little, my heart rate would shoot up. I was also experiencing chest pains.”
Neha Rajamani, a 30-year-old former web developer, too has been experiencing chest palpitations, chest heaviness, neurological, gastrointestinal, and cardiac issues ever since she contracted COVID.
What Karishma says about all body parts being affected, is echoed by most long COVID patients.
Dr Aparna Chakravarty, Associate Professor, Infectious Disease, Amrita Hospital, Faridabad, tells FIT that long COVID is a chronic condition with symptoms that can be generalised to extremely specific and severe.
“Addressing it can be extremely difficult for medical professionals too, let alone the patients,” she says.
‘Getting Diagnosed Was a Struggle in Itself’
Diagnosis for long COVID doesn’t come easy.
Sourya Dash has previously spoken to FIT about how hard it was for him to get a POTS diagnosis, post-COVID.
He says he had to consult with multiple doctors – cardiologists, pulmonologists, and general physicians – before he could find one who actually acknowledged that Dash’s health concerns were serious, and who did not invalidate Dash's issues.
Dash tells FIT, “I was told – ‘You’re reading too much. It’s anxiety. It’s in your head. It’s nothing’. So I started reading up, catching up with the latest medical research on long COVID, and connected with a community of patients.”
Rajamani still feels she has to play down her condition when she seeks a doctor consultation just so the doctors actually listen to her.
News agency PTI also reported in February 2024, quoting a Europe-based story, on how "medical gaslighting" has been severe with long COVID patients.
The long COVID patients have had to rally themselves to get the help they need. Dash, Karishma, and Rajamani are all part of a Telegram group created by journalist and activist DVL Padma Priya for long COVID survivors.
That is how they’ve found doctors, medical help, and support to continue living with this.
The problem is also that there are no biomarkers, established treatment protocol, or advanced testing that is known to specifically help long-term COVID patients.
With research about the condition still underway, Dr Chakravarty says that there’s no treatment or cure yet.
"For now, it’s only the patients looking out for each other. It’s like the early days of the HIV epidemic. With a disease that should be funded and treated, we’ve been left to our own devices."Karishma, 32
And even after getting diagnosed, there’s one problem that remains. Many of the long COVID patients have limited mobility or are bed-bound.
Doctors, however, are not as open to virtual consultations anymore as they were a few years ago.
‘Slowly Dying: You Can’t Manage Life & Long COVID’
When FIT asked these patients what life with long COVID is like, there was a common consensus that it’s not a life at all.
‘It’s hell,” says Dash.
Karishma agrees. She says, “You’re slowly dying.”
They’re not exaggerating when they say this.
Rajamani has had to quit her job. Dash was unemployed from May 2022-July 2023. Karishma has had to cut down on work, and says that with the way her disease is progressing, she might have to “completely let go of working in the future.”
Ashlesha Thakur, a 38-year-old media professional, has had to resort to working from home.
There’s a whole lot of emotional and financial draining, says Thakur, but what is more is a certain sense of vulnerability.
She says,
“I have not felt fully healthy in years because of long COVID. I’m now extremely scared of the change in weather – I dread the cold weather, which was not the case earlier. I'm more scared for my son now who has been facing health issues too. Long COVID has instilled a sense of fear in me that I never had before.”
When you only have a limited quota of energy and new symptoms each day, your social relationships also go out of the window. As do any hobbies, travel plans, or goals. What is left, echo the patients, is uncertainty.
Is there a way to cope with this? Dr Chakravarty says not really.
“Different things might work for different work – for some it may be a clean diet, for some, it could be working out. But since the manifestation of the condition is different in different individuals, there’s no one way it can be managed,” says she.
“The only way to cope is resilience, knowing your body’s limitations, and adhering to them.”Sourya Dash, 40
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