‘Acceptance’ is a word that recurs in the conversation with DVL Padma Priya.
In April 2020 she woke up, as she says, with the worst headache she had ever experienced. Almost two years on, she’s grappling with several long-term manifestations of Covid-19, accepting the many unknowns that shroud the way SARS-CoV-2 affects different parts of the human body.
“There are days when I can’t remember daily objects like a fridge or a remote, or have blurred vision,” she says, “and it’s really scary for me.” She just waits it out, till it settles.
Priya recalls how a neurologist had said that her brain was showing changes similar to that of a 70-year-old with Parkinson’s. Priya is in her mid-30s.
Earlier this month, Nature published a study in the UK that found changes in the brain, including reduction in size and cognitive decline, among other things, in older people affected by mild Covid-19. The United States Centers for Disease Control and Prevention (CDC) defines long Covid or long-haul Covid as a condition where people experience a wide range of “new, returning, or ongoing health problems” for weeks or months after being infected with the virus.
For Priya, it’s certainly been a long haul, having gone through blackouts, multiple falls, “unable to sit for 30 minutes without a migraine”, intense fatigue and unexplained blood pressure drops, among other symptoms. Worse, she encountered some doctors who put her symptoms down to anxiety — “it’s in your head”.
Fighting back, Priya researched her symptoms, speaking up for herself and fellow Covid ‘long haulers’ in search of support and doctors who acknowledged that long Covid is for real.
Doctors did, eventually, identify that her autonomic nervous system was affected and she had Postural Orthostatic Tachycardia Syndrome (POTS — affecting blood flow).
“The shocker for me was that not many doctors were aware of post-viral complications,” says Priya, a co-founder of Suno India, a podcast platform, and Founder, India Covid Survivor Group (reachable at https://t.me/+3SHOL_cmzpkyYzdl). “What stops doctors from researching the latest data on long Covid,” she asks, acutely aware that the condition has slowed her for now, even as it’s made her more accepting of reality.
‘Rest a lot’
“Now when I feel fatigue, I stop work and lie down... and later eat something,” she says. “I’ve learnt not to be hard on myself... this is my reality.”
Quoting independent journalist Fiona Lowenstein, Priya says, “You need to listen to your body and rest a lot”, as opposed to getting back to exercises and physical activity. And this, she says, requires support from family and employers, for instance.
Dr Sujeet Rajan, Consultant Respiratory Physician (Interstitial Lung Diseases) at Bombay Hospital, is among the early voices who spoke on the possible long-term effects Covid-19 would have on the lungs.
One of his patients was on six litres of oxygen and expected to be oxygen-dependent lifelong, he recounts. But 18 months later, she has improved and is completely off oxygen. However, he cautions, people seen to be more susceptible to long Covid include women over 40 years, those who are frail, and with severe asthma, among other things.
Research and support
Urging doctors to undertake local research on long Covid, Priya says doctors need to listen to their patients and believe them. “When a doctor shoots down what a patient is experiencing, often it also gets shot down by the family too,” she points out.
Family support structures for those dealing with long Covid are hugely required.
After her second bout of Covid and hospitalisation, including ICU stay, Priya had to deal with PTSD (post-traumatic stress disorder). “There were moments of complete despair,” she says, adding that “there was a point when I wondered if this life was worth living.”
Many may be living with long Covid but possibly not receiving support, she says, adding that it could be worse in small towns, rural areas and among the economically disadvantaged.
Despite having protocols to manage long Covid, Priya says, a lot more needs to be done to understand, research and support those living with long Covid in India.