There have been several instances in the past seven years when Germany-based Michelle George (28), originally from Kerala and now pursuing a master’s degree in neuroscience, has dropped out of her classes and abandoned social calls. As a person with celiac disease associated with chronic fatigue syndrome (CFS), she goes about her daily routine while managing chronic joint and muscle pain, as well as migraines.
“I started to get sick during my final year in 2014 and almost didn’t graduate. But I was able to convince my university to permit me to take my exams at a different point than the rest of the batch. Later, I thought I would have to drop out of my postgraduate diploma course as well, but they, too, allowed me extensions,” she says.
Michelle says she’d eventually like to pursue a PHD, but notes its gruelling requirements even for those deemed perfectly healthy.
“Chronic pain conditions are quite common in India but often left undiagnosed. They’re a lot like depression, on a purely societal level. Most people don’t believe survivors let alone accept their pain,” she says. “[In my experience,] even doctors go through about five diagnoses that fit your symptoms before chalking them to psychosomatic disorders. I, too, was initially diagnosed with generalised anxiety disorder and given antidepressants, even though I had very strong physical symptoms.”
According to a study published in Pain Practice Journal in 2014, the country’s first pain prevalence study with 5,004 respondents from eight cities, there was no published literature available on the prevalence of chronic pain in India. It, however, noted that “a significant population suffers from chronic pain, and their quality of life is affected leading to disability”.
Chronic pain, distincted from acute pain by virtue of its ailments spanning months, years or even lifetimes, may be the result of an old untreated injury, an ongoing illness or have no determined cause as such. Ranging from aching, burning, shooting, stinging, throbbing and tightening sensations, it is often accompanied by fatigue, sleep disturbances, loss of appetite and mood fluctuations. These may impact a patient’s movements and stamina, thereby interfering with their personal and social commitments.
Moreover, chronic pain might also just be a symptom to various other illnesses, including disabilities, and is thus referred to as an “invisible disability” in activism circles.
Seven years since she received an official diagnosis, Michelle says that a combination of painkillers and coping mechanisms have helped her not be as bothered with CFS as she used to.
She, however, credits the drastic improvement of her emotional well-being to Chronic Pain India (CPI), a Delhi-based charitable organisation that has been raising awareness on as many as 121 chronic conditions in the country since 2017.
CPI has successfully catered to the needs of hundreds of Indian chronic pain patients by not only providing them with a compassionate community by way of its support groups but also roping in medical professionals to provide consultations and pain management solutions.
It was founded by Dr Anubha Mahajan (30), a Gurgaon-based dentist who also undergoes chronic pain stemming from Complex Regional Pain Syndrome (CRPS). The rare neuromuscular condition is said to develop after an injury, surgery, stroke or heart attack. Her condition, however, was the result of medical negligence following a car accident in 2014, which left her with an injury in her left leg.
‘Not Patients, But Warriors’
“About one in 10 lakh people are diagnosed with CRPS, which may impact an arm, a leg or the entire body. The pain is such that it is considered to be higher over non-terminal cancer on the medical scale,” Dr Anubha tells The Better India. “In my case, it happened because of a doctor’s mistake, who put a tight plaster which compromised the vascular supply below my left knee. Being a doctor, I knew something was wrong and had it removed soon enough. If it would’ve been a few more days, I would’ve lost my leg. But the nerve damage was done and the illness had entered my life.”
“I became a dentist and a patient in the same year. It took me sessions with multiple doctors for a year to finally arrive at a diagnosis. It is not an easy condition to live with. For seven years, my body was pumped with so many medications that it started rejecting painkillers; I now take them intravenously. During COVID-19, too, CRPS made me more vulnerable and I was in quarantine for the first year. Nurses used to visit me at home, with the same stock of medicines you’d typically find in an emergency room,” she adds.
For the past five years, Anubha has been in cognitive behavioural therapy to manage excruciating levels of pain regularly. “You have to train your brain to deal with tough situations and combat severe pain. It’s like your whole body is screaming, but you’re still smiling,” she says.
“My struggles may have taught me a lot, but CPI wasn’t started for me. What began as an open platform to share stories of struggles has now become a repository of resources. There is such little knowledge about chronic pain conditions in India, especially in small towns and rural areas, that we attempt to provide a person with an initial (unofficial) diagnosis if they need one. We then help them connect with doctors, including therapists, physiotherapists, pain specialists and neurologists, who can help them out with medicines and pain management techniques. These are people who survive and conquer silent battles every day. They’re not patients, they’re chronic pain warriors,” she says.
Since CPI’s registration in February 2019, a total of 119 professionals have provided support and/or led as many as 10 workshops and 32 webinars on pain management and associated art therapies. Anubha also runs a WhatsApp helpline for long-term assistance, with the help of four volunteers, which typically receives a couple of enquiries every day.
“During the peak COVID-19 times, we received about four to five calls every day. We have also assisted 200-300 people on our six (Facebook) support groups and at workshops in Bangalore and Delhi,” she says, adding that CPI has impacted the lives of 1,600 chronic pain warriors so far.
Uniting Warriors Via Social Media
It was in 2016 that Anubha began pursuing a postgraduate degree in dentistry from a Bengaluru-based university, armed with coping mechanisms to manage her chronic pain. However, the new city brought with it a fresh set of troubles.
“My neurologist had warned me that I should be prepared for CRPS to present life-long challenges, but I had no idea that it was going to be a progressive illness. My left hand was starting to get affected and I had to undergo surgery. There used to be days where I used to drag my leg around the campus. My guide used to tell me that I was mentally unfit to do anything and after being bullied for two-and-a-half years, I dropped out in January 2019,” she recalls, adding,” It was then that I realised that mental trauma can impact, and worsen, your physical health.”
But Anubha had already begun CPI as a personal project two years earlier, after a thought-provoking run-in with another chronic pain patient.
“She waited until my class was over and talked about how she’d been dealing with chronic pain since she was 16 years old. She was a BTech and an MBA graduate but said how her parents always thought that she was making excuses to get out of studying. She had recently been diagnosed with Fibromyalgia and had so many questions about her medications and their side effects. But it was late at night and raining heavily, so we both had to leave. I gave her my number, but she never called me,” she says.
Later, Anubha couldn’t stop thinking about how she could’ve helped the woman. “I had all the answers she’d wanted only because I was a doctor. In fact, just after I had been diagnosed, I, too, could only find four sentences on what CRPS is in my course books. I had to work hard and educate myself for two years to find solutions and with CPI, I could share those with others,” she says.
So in 2017, Anubha renamed her personal Twitter account to ‘Chronic Pain India’, beginning by sharing her own story. “With a little help from my friends, I leapt to launch the CPI website, encouraging others to share their struggles, too. The initial traction was only 14-15 people, but it was one of the most beautiful chapters we had,” she says.
“These were blog posts from people from all walks of life, who discussed the personal and social impact of dealing with chronic pain. Some of them talked about how they carried on when their bodies had given up, and even when they were abandoned by their families. One of the most beautiful write-ups was from a published author who had written an open letter to a friend. I learnt the extent to which social media could help,” she adds.
It wasn’t long after Anubha obtained a domain for her website that scores of stories from across the country started pouring in. Eventually, CPI initiated its support groups and workshops, both offline and online, and began interviewing chronic pain warriors to increase awareness of their conditions. It was in September, however, that CPI landed its first big break when they roped in Indian filmmaker Vikram Bhatt to share his ‘warrior story’ as a person with Fibromyalgia.
While Anubha began CPI as a single-handed effort, today her small team comprises 12 people, including volunteers — most of whom are also people with disabilities and chronic illness.
For instance, NCR-based Swati Agarwal (34), who handles communications and outreach for CPI, says she deals with fatigue, cognitive difficulties and sleep disturbances as a result of Fibromyalgia. “On most days, I wake up with pain and feel too tired to even get out of bed. It is difficult for me to do any physically-demanding activities, and I have to ensure that I take adequate rest in between stressful times,” she says.
“I quit my hectic job in Mumbai to take care of my health, but now I finally work with an organisation that takes accessibility seriously. We provide individual resources for people and respect their autonomy and confidentiality. I, too, found camaraderie among fellow chronic pain warriors — it always helps to know that you are not alone, and to learn from the lived experience of others,” she adds.
Anubha, who began CPI with her savings of Rs 50,000, recognises that the trust has a long way to go, specifically highlighting the need for additional funds. She notes how the COVID-19 pandemic has hindered their capability to organise offline workshops and function out of a physical workspace.
“But our main motive remains to ease the lives of people with chronic pain, whether it is providing nutritional guidance or palliative care guidelines. We have also partnered with a couple of companies that sell CBD oil (Boheco) or devices with pain-alleviating technologies. We have these companies offer up to Rs 6,000 of discounts and also enable their rentals for those who can’t afford them,” she says.
For instance, Nilgiris-based Meenakshi Venkataraman (49), who was diagnosed with CRPS in 1999, says she now uses ‘Oska Pulse’, a device that helps improve mobility by decreasing inflammation and increasing circulation.
“We have been able to provide support to a considerable extent, but it’s not very structured because CPI is still a baby,” smiles Anubha. “Someday, I want CPI to be a shelter for all chronic pain warriors in the country. The medical sector is riddled with clueless or money-minting doctors, but we need better healthcare now more than ever aur hume kahin se toh shuruat karni hai (and we have to get started somewhere).”
To make donations or further information, you can reach Chronic Pain India here.
Edited by Yoshita Rao