Imagine waking up in the middle of the night with an awful, excruciating pain in your entire body. You can’t move, sleep or think. You need immediate medical help, but you can’t go out because you are in a lockdown, brought about by the coronavirus outbreak.
For Anubha Mahajan, this was her Saturday night.
Anubha has Complex Regional Pain Syndrome (CRPS) that affects her peripheral and central nervous systems. For her and for many others suffering from chronic illnesses, such episodes of pain and sudden attacks can be frequent. In such situations, they need medical assistance by either somehow managing to go to the hospital themselves, or by calling a medical practitioner home.
But during pandemics, none of this is possible. Lockdowns, risks of catching the infection, social distancing and isolation leave them where Anubha was on Saturday - waiting and praying for the pain to go away.
Pain, and Life Under Isolation
The COVID-19 pandemic has affected us all and uprooted our routines. We’ve been advised to stay home, take care of our hygiene and isolate ourselves. But there are countless reasons why social distancing and contagious disease outbreaks can be especially difficult for people with chronic illnesses.
First, they belong to the high-risk category. According to the World Health Organisation, older adults and people of any age who have serious underlying medical conditions may be at higher risk for more serious complications from the disease caused by the novel coronavirus. A relatively compromised immunity is what makes them more prone to these complications, and this is the reason why going out, especially to a hospital, can be extremely risky.
Anubha Mahajan“I’m scared. I cannot go to the hospital with the numbers and cases increasing daily. Even a regular fever breaks us down. How will be able to survive this infection? Our bodies can’t handle it.”
Second, in curfew or a lockdown it is difficult for even a doctor to come to their homes for emergencies, especially if they don’t have their private vehicles. Logistical issues and the risk of getting an infection can be major obstructions in getting anybody to reach them on time.
In fact, Anubha’s society has closed its gates for maids and drivers, which means that her driver, who has been with her for six months and knows what to do when her illness shoots up, is now not available to take care of her.
Anubha“If I have such an episode again, I will have nobody. I can’t call my family, they’re in Faridabad and can’t cross a toll. My driver, my friends who are aware of my illness can’t come in. Nobody in the society knows how to manage my condition. My driver knew everything. Even what to tell the doctor if I am unable to speak. But how will he come?”
After a cry for help on social media, Anubha finally got someone to take her to the hospital. But she’s constantly haunted by the thought of another such spasm. “What about the next time?”
The Paradox: The Need & Difficulties of Isolation
Purva Mittal has spinal muscular atrophy, a rare genetic disease in which one particular neuron inhibits all muscular movements and hampers lung capacity. It’s also one of the most fatal genetic diseases, where 90 percent of the community succumbs by the age of 10, and many of those who survive, remain in a vegetative state.
Purva Mittal“You have to understand, even a normal fever of flu can easily get converted into pneumonia in us. We are already dealing with the problems that coronavirus leads to: breathing difficulties, fever, or chest and nose symptoms. All this without being infected by this particular virus. How will we survive this one, knowing it’s harsh on the lungs?”
This makes isolation crucial for them. She tells me going to the hospital is the last resort because she is so prone to infections. But on the other hand, there also is a constant need of medical attention and physiotherapy. “We cannot be left alone. I need someone around me all the time. So what do we do? How do we reach a middle ground?”
Knowing how other countries are dealing with the peak of the outbreak have made the fear more real for Purva and Anubha.
Purva Mittal“I was doing my research on Italy. They had to selectively treat infected patients based on the chances of survival. Where do we stand in such a criterion? Will we be left to die? Because if we don’t get immediate medical attention, we will die.”
“We are not sure about anything anymore”, she says.
The Community Needs to Step In
Dr Khan Amir Maroof, Associate Professor, Community Medicine, UCMS and GTB Hospital, Delhi tells FIT, “More often than not, chronic illnesses are hidden, and consequently, neglected. Chronically ill people need medication for a long period, and if this is interrupted, their symptoms will exaggerate and the complications will flare up.”
He makes a few recommendations that may help make the situation better:
Local hospitals should step up so that they become viable options for follow-up check-ups.
Doctors can make themselves available for online consultations so that nobody has to step out. It’s also important for patients to keep their records on their phones for these consultations to be possible.
Support groups are paramount in these cases. We need more support groups to exist and to step up to help people in case of emergencies. For instance, if someone runs out of medicines, they may not be able to go themselves. We need volunteers to help people out. Engage people from the community and beyond.
Neighbourhood connectivity is another must, especially during lockdown and isolation. People around should be aware of the patient and should constantly offer help for whatever they may need - groceries, medicines or a visit to the hospital.
Physical activity is extremely important. At-home yoga or stretching exercises should continue as much as possible, otherwise, the problem may aggravate.
Their fear is confounded when the general public hoards up medicines and painkillers that people with chronic illnesses rely on. “I saw a man buying 12 packets of paracetamol. 12 packets! What will be left for us?”, Anubha said. She requests for this to not happen, for people to not unnecessarily hoard medicines and deprive those who may not be able to survive without them.
In these difficult times, the solutions will have to come from the community. Knowing and identifying vulnerable people around and checking up on them is crucial. On an individual level, following precautions is a must, because there is no better way to help than to contain the spread of the disease.
“Don’t go out, do it for us!”
(Chronic Pain India is a support group for chronic illness and chronic pain sufferers in India. Here’s a list of COVID-19 guidelines compiled by the group for vulnerable people and caregivers.)
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