I still remember the horror of getting that ankle sprain, leading to a wrongfully put cast on my left leg in April 2014 and the experience through it, leading to a year long journey from one doctor to another in Delhi NCR, with no clue what I was suffering from and how it’s going to impact my whole life ahead. It was somewhere around June 2015, I met my first pain specialist who diagnosed me with Complex Regional Pain Syndrome (CRPS). Before that it was just doctors mocking me and questioning me before coming to wrong diagnosis. Those numerous tests and scans were not much evidence to lead to correct diagnosis. Being a Dentist apart from being a curious student helped me out of my situation by understanding CRPS. And then, my real journey began. It had been a tough journey with lots of ups & down until 23rd March 2017, when CRPS finally affected my whole body. However it did not stop me from living my life. But, this made me go through many harsh realities about how doctors treat chronically ill patients, the healthcare scenario in India to be precise, which I was proud to be a part of at some point of time (As a kid, I always wanted to be a doctor and help patients in healing.)
My journey through pain did disappoint me at times but never motivated me enough until I came across this female in my gym. She was in my Yoga class and somebody had told her about my battle with chronic pain. She came to meet me outside the gym with lots of questions. It was raining heavily in Bangalore that day and both my mother & I were all worried searching for an auto or cab, when this female approached me. I don’t remember her name (my memory issues back then), but I remember clearly she had been suffering from Fibromyalgia since the age of 16 years with no diagnosis until then. She told me her struggle since last 8 years of her parents not understanding her, calling her pain as her escape from studies (typical Indian parents’ mentality). She had many questions about the pain, pain medicines & if the doctor was treating her correctly. She wanted my opinion over it & wanted to get in touch with me. Unfortunately, I had got robbed one week back and did not have a phone with me, so, I gave her my mother’s number & we parted over that note. That was the first time; I came across another pain sufferer face to face and it gave me a feeling of relief and content inside. I did not feel alone. I was looking forward to her message, wanted to stay in touch with her. Unfortunately neither I heard from her again, nor did I find her in the gym.
This incident made me wonder, how many people like me would be out there in India, fighting their personal struggles mentally & physically, getting mocked and misunderstood over their suffering, still fighting it all with their head held high…yet, feeling alone inside. The loneliness of not being understood at home, workplace, hospitals, yet moving ahead with life.
3rd June 2017 was the day I first used the word, “Chronic Pain India”. It was a tough decision to make. I still remember having goose bumps that day when I wrote my first blog post “Humanity” and later shifted my personal twitter account (which I had never used before) into Chronic Pain India. This is how Chronic Pain India was born in my head and it had its first cry as a baby. Yes, I consider it as my baby and I want it to be nurtured like that until it grows into something big.
Through the medium of writing I want the voices of every person suffering by chronic pain conditions or chronic illnesses in India to be heard. Chronic Pain India will be a voice for every such Indian. We’ll try to cover every aspect & situation they go through to raise awareness among people & eventually make the healthcare better for us in India.
Chronic Pain India wants the voices of every chronic pain & chronic illness sufferer to be like a tiger’s roar, standing out and marking their territory saying that, “We won’t stop until we are heard, and things are changed for us. We have equal rights as every other Indian; we deserve to be treated equally. We may be suffering by conditions that are not visible to naked eyes at times, but that doesn’t mean we don’t deserve to be understood. We may be suffering from conditions that are incurable in certain ways & situations but that doesn’t mean we don’t deserve better medical treatments and healthcare in India. We deserve to be understood in each and every aspect. We may be in pain, but we are strong. We don’t want mercy or sympathy, we want to be understood.“