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, being an only child I had to be my own bone marrow donor too.
Years later, as a new mom, I struggled with postpartum depression. I completely ignored the “body” part of health at that time and 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 persistent depressive disorder commonly labelled as just 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.
When I look back now I realize I might have had Fibromyalgia (a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized tenderness at specific points on the body) for almost two decades but was finally diagnosed conclusively only in 2017 after a major flare that was triggered by an unexplained fall down the stairs. The doctors however in my small Indian town still didn’t have a conclusive treatment plan for me.
Luckily I moved back to Delhi soon and the orthopaedist, physiotherapist and neurologist here had better resources and guided me better, though treatment was mainly preventive and physiotherapy and exercise was advised. (Meanwhile I was also going through a divorce which ended a 20 years long relationship and a 13 years old marriage, the stress acted as a major trigger.)
Even for someone quite privileged with an English education, easy access to internet and reasonably secure finances for a middle class person, the fibromyalgia onslaught was too overwhelming on all accounts – making sense of the condition, seeking online support and motivation and financially/logistically.
When I reached out to the online community at themighty.com I found out more survivors closer to home and a lot of everyday advice and suggestions, but sadly had no real life support or caregiver.
Two necessary components of Fibromyalgia support are professional physiotherapy and medicines commonly prescribed here like Pregabalin which are both not easy to access and quite expensive for most Indians.
In addition, the lack of social awareness about chronic invisible illnesses like fibromyalgia in India leads to complete lack of empathy by family, friends and sometimes even healthcare professionals.
Sadly, the Indian medical care system for survivors of chronic invisible illnesses is as good as completely absent. Patients are mostly told no tests show any ailment so it’s “all in their heads” and they are thus left to fend for themselves and rely on their own resources – mainly online research, international support groups and websites. Only a handful of friendly medical health professionals will actually offer treatment and support and most of all empathy and recognition of your illness.It is estimated that approximately 28 million people in India live with fibromyalgia and nearly 400 million with chronic pain.
The Government of India official website National Health Portal just says:
“Fibromyalgia is still considered a medically benign disorder, as it does not cause any serious problem or physical deformities, or loss of life. But it has a profound effect on the quality of life of the patient because it interferes with a person’s ability to perform everyday activities and affects cognitive functioning such as the ability to think, to reason, to remember.”
Besides this description it offers no other resources, support for the disorder, whereas in several countries of the first world it is recognised disability.
So how do I handle my Fibromyalgia now, being a single parent, being the sole caretaker for my elderly Cibophobic and Anxiety Disorder afflicted mom and keeping it all together.
This has three aspects:
1. Physical therapy, ideally guided by a trained physiotherapist initially, exercises can be later followed up alone but machines for UV massage etc. available only in clinics and hospitals, which is often a paid facility and requires long waiting hours too. (I skip this because of the cost and logistics)
2. Exercise and fitness program, which again needs guidance by a trained professional in early stages but can be carried out alone later. In my manual labour intensive household I have little support, I try to maintain it regularly but often fail.
3. Stress-relief methods, including light massage and relaxation techniques, antidepressants or muscle relaxants as prescribed by doctors to induce a better sleep pattern and overall relaxation for muscles , can’t take those because have a child to look after.
Medicines though too are effective only along with exercise and behaviour therapy, lifestyle changes and a lot of support at workplaces and from family. I have none, and the sole thing that keeps me going is my writing and my daughter’s love which also has its bad pre-teen days!
One of the most frustrating moments of my fibromyalgia journey remains still that at the mention of my ailment people ask suspiciously, “What is that?” and in the same breath say nonchalantly, “But you look fine!”
I hope we keep raising our voices in India for fibromyalgia and other chronic invisible illnesses and work towards making a more sensitive society, and then take the next step towards making it a legally recognized disability too.