Misdiagnosis, isolation, and hopelessness - survivors of invisible illnesses turn to build a community and form solidarities
Any pain lasting more than three months can be defined as chronic pain. It might stem from an injury, medical malpractice, or an illness. In instances where the pain is not connected to an illness or a visible injury, it has been reported that even physicians are dismissive and claim it is all in ‘your head.’ Many chronic pain survivors traverse a long and lonely road of misdiagnoses. It often takes very long for them to correctly identify their condition and understand how to cope with it.
Chronic Pain India is one such support group that crowdsources personal stories and discusses common issues of interest amongst those living with chronic pain.
The group first started in the form of a Twitter handle — started by Dr Anubha Mahajan — in March 2016. A dentist from Faridabad, Delhi, Dr Mahajan suffers from complex regional pain syndrome and centralized pain syndrome caused due to a doctor’s mistake. In this post on the Chronic Pain India website, she outlines how meeting another woman who shared her own journey of living with chronic pain shifted her outlook significantly.
“This incident made me wonder how many people like me there are in India, fighting their personal struggles mentally and physically,” she says. “The loneliness of not being understood, yet moving ahead with life.”
In a recent study (where the audience sample size is 836) — the prevalence of chronic pain in India was found to be 19.3%; higher as compared to other Asian pain prevalence studies.
The Chronic Pain India group has been empowering for many (its Facebook group consists of 106 people). Dr Mahajan says “Initially, most of the people I came across had given up on their lives or were quitting their jobs, and had zero faith in doctors. But with time, the more we connected and shared stories, the more people benefitted from the group and felt less alone.”
In 2014 Namrata, a 34-year-old writer who used to work in investment banking was diagnosed with Hashimoto's, an autoimmune disorder in which antibodies directed against the thyroid gland lead to chronic inflammation. She describes her diagnosis as a ‘rude wake-up call’ (because of low awareness about autoimmune diseases) that she received during the peak of her career.
She shares how being a part of Chronic Pain India helped her accept the limitations in her life that the illness caused, “My interactions with the team members made me see that it was okay to not be okay. We are not competing with others in day-to-day life. Our struggle is to keep striding ahead despite it all and believe me, the struggle is real.” She now works out of her home as a freelance editor and writer.
Dr Deepali S. Ajinkya — physician, psychotherapist, clinical hypnotherapist — says that chronic pain patients usually come with combined complaints of physical and psychological issues.
“In most patients, the acute pain gets worse and persists over a long period, leading to chronic pain,” she shares. “During this worsening process from acute to chronic, their confidence drops drastically, their work gets affected and it becomes difficult for them to even perform their daily activities. This is severely damaging to their self-esteem. If they don't find any support from family or other social support at this point, the situation worsens further, leading to depression and anxiety.”
Pain medicine practitioner in Mumbai, Dr Mahesh Menon points out, sometimes a specific event — like an illness, injury or surgery — triggers the onset of chronic pain. But he adds, “(...) There are people who don’t recall a specific trigger for their pain. Chronic pain is a byproduct of our neurological hardware and software. It is modified by internal and external factors to lead to a heightened sensation of pain that is difficult to treat or eradicate.”
Arun Dahiya — a member of Chronic Pain India group — is a primary school teacher who was diagnosed with interstitial cystitis, fibromyalgia, and myalgic encephalomyelitis. She shares, “I hope, in the future, there are more support groups like this so we can fight the stigma around invisible illnesses, so these conditions get some voice and awareness. Right now, lots of people are undiagnosed and suffering just because they don't know whom to reach out to and how to get help.”
Persons who live with chronic pain face a number of challenges: Fear about opening up about their illness, that might lead to job loss or ostracization; and insurmountable monetary issues due to the cost of the illnesses’ treatment..”
Going forward, the goal of Chronic Pain India is to raise awareness for each and every chronic illness which is invisible to the naked eye. They also hope to organize lectures and sessions in hospitals to make general doctors aware of these conditions so that they can refer them to the relevant doctors, such as pain specialists.
The idea is to build a support group system in India, one city at a time, and carry out surveys to prove their benefits. The very first Chronic Pain India meet-up took place at the end of last year, from which Dr Mahajan reports many happy faces.