What It's Like Living With Fibromyalgia in India
My tryst with invisible illnesses is almost lifetime long.
My late father would call me “fragile bones.” Health was always a concern for me, and my immune system was always weak. After years of misdiagnosis as tuberculosis of the bones I was correctly diagnosed years later with having osteoid oesteoma when I was 19.
Life was beginning for me in many ways back then, but it also altered forever post my first joint surgery. Years later as a new mom as I struggled with postpartum depression. I completely ignored the “body” part of health and was focussed more on getting the mind right.
A couple of years ago my mental health went down a spiral again as I grieved over my father’s death, and struggled with both parenting my curious child and being the sole caregiver to a grieving parent, being her only child.
That is when an auto-immune fever hit me, the aches and the pains got worse and even every day routine became extremely difficult. I kept attributing it to my weak immunity and depression.
In the social setup in India, mental health and chronic illness (especially the invisible ones) are not considered worth any sensitivity or attention. Lack of awareness even among the closest to you makes the illness even more difficult to bear.
A couple of months ago, following a series of medical tests and excruciating, almost debilitating pain, I have finally been diagnosed with the lifelong monster of invisible illnesses – fibromyalgia, a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized tenderness at specific points on the body.
The flare I have been in has been my worst pain experience ever. The brain fog so advanced that I often forget my name; the pain so extreme that even turning over in a bed seems like a Herculean task. I can’t read, write, or blog because the straightening of my neck bone is leading to extreme stress and dizzy spells. Hearing in one of my ears is also affected.
So how has life changed?
Explaining to my child was the hardest part because she was baffled about why I can’t do so many activities with her that I used to do earlier. Why am I always tired? Why don’t I dress up well and often?
Explaining to myself was also not easy. I was no longer the same person. This would take away a lot of what I loved – writing my blogs, my translation, content work online and most importantly, being a hands-on mom for my Little Buddha. It would take away a million small, less significant things away too – handbags, fancy shoes, self-care, reading and exercise, all of which became extremely painful and cumbersome. Sleeplessness became worse and “I am fine” seemed the cruelest phrase ever.
Sometimes even my daughter’s tight hugs hurt. Sometimes even in extreme loneliness when I look forward to a conversation with a friend, the brain fog leaves me blank.
In public places when I avoid stairs, I am given strange looks. In public transport when I demand a place to sit I am labelled a prude, even some of my friends don’t understand why I need my naps and breaks.
The emptiness, frustration, hopelessness and the isolation grows. With each passing day it seems like a lost battle even before it begins every single day.
At best, to me living with fibromyalgia is like living with an invisible abuser, who has you captive for life. There are good days when it lets you breathe for a while, but just when you have almost forgotten the pain, it brings back the bad days which don’t cease and outnumber the good by far.
Living with an invisible illness in India is also a challenge in itself; there is immense lack of awareness, insensitivity, lack of proper and affordable, easily accessible healthcare and most of all the stigma of being a spoonie.
For the time being, my will and strength to fight comes from my daughter, a few discerning friends and online support groups.
I repeat to myself – we are all alone in this together.
Let us create a more empathetic world for everyone who is invisibly hurting. Let us side with the survivors and not the abusers.
Getty Image by dmitryzubarev
This story originally appeared on Feminism in India.