Why We Need More Fibromyalgia Awareness in India
My Personal Story
When I look back now I realize I might have had symptoms of fibromyalgia 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 orthopedist, physiotherapist and neurologist here had better resources and guided me better, though treatment was mainly preventive and physiotherapy and exercise was advised.
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.
However, reaching out to The Mighty community with my article What It’s Like Living With Fibromyalgia in India made me find more survivors closer to home and a lot of everyday advice and suggestions.
The Indian Story
But then I realized how difficult it must be for most Indian women who might not have access to an English education that prevents them from the technical understanding of their condition, or they might not have easy/affordable access to internet which will make finding online support impossible and professional physiotherapy as well as medicines commonly prescribed here like pregabalin too expensive to afford for a long time.
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 like FibromyalgiaAwareness.com.
Only a handful of friendly medical health professionals will actually offer treatment and support and most of all empathy and recognition of your illness.
Specific Indian Issues About Fibromyalgia
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.
The treatment in India generally follows this pattern:
- 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.
- Exercise and fitness program, which again needs guidance by a trained professional in early stages but can be carried out alone later. Though considering majority of patients in India are women and live in manual labor intensive households, I have often found myself and fellow survivors not able to maintain it regularly.
- Stress-relief methods, including light massage and relaxation techniques again not easily accessible or affordable by the majority here. If these treatments do not work, antidepressants or muscle relaxants are prescribed by doctors to induce a better sleep pattern and overall relaxation for muscles that have been in consistent stress for long. The goal is to improve sleep and help the survivor to tolerate the pain better.
Medicines though too are effective only along with exercise and behavior therapy and lifestyle changes might be required too, which often require a lot of support at workplaces and families and thus are often not easy to get as “you look fine” and an illness here is mostly only recognized as one if it is visible.
While the rest of the world is signing petitions about making fibromyalgia a recognized disability, so that survivors can get disability healthcare and workplace benefits, India is yet to even recognize it as a real condition affecting large numbers.
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.
Getty Image by Wavebreakmedia