Accessibility May 12, 2020
Struggles of a patient fighting Fibromyalgia, an invisible illness. – My Take by Swati Agrawal
Swati Agrawal is a diversity and inclusion activist. She lives with her two cats, and Fibromyalgia and Bipolar Disorder! She tries to spread awareness about invisible illnesses and mental health conditions and is an advocate for the rights of the patients. She has also started a support group for Fibromyalgia patients in India.
Did you know that 12th May is the international day for awareness about syndromes like Fibromyalgia, Chronic Fatigue Syndrome and Myalgic encephalomyelitis (ME)? It is designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. In all probability, you might not have ever heard of these diseases. In this article, I am writing about my struggles with one of these illnesses – Fibromyalgia.
I am a Fibromyalgia warrior and have been battling this invisible illness for around eight years now. It’s called an invisible illness as you can’t tell by looking at Fibromyalgia warriors that they are suffering from a disease. We look fine, but are battling symptoms like chronic pain, fatigue, sleep disturbances, cognitive difficulties etcetera on a daily basis. Moreover, there are no blood or other lab tests that can show the occurrence of Fibromyalgia in a patient (or warrior, as I like to call them). The diagnosis is based on clinical information and after eliminating other possible diseases with similar symptoms. No one knows the cause of this syndrome. There are not even official statistics available in India about the number of Fibromyalgia patients. With misdiagnosis and lack of diagnosis, it would be difficult to arrive on such figures.
Struggles of Fibromyalgia patients in society
I had not heard of Fibromyalgia until I was diagnosed with it. Unlike many other diseases, it is not a rare disease. Yet, there is very little awareness about it. This creates a lot of hardships for Fibromyalgia warriors like me. A common statement that I have heard is – ‘(but) she does not look sick’. It’s difficult for people to believe and accept someone with invisible illness. It’s easy to dismiss people like me as lazy, liars, unmotivated etc.
There is lack of acceptance in the society, and it really pierces my heart when I see the apathy towards people with invisible illnesses around me. Forget about strangers or acquaintances, even the family and friends do not believe people with invisible illnesses. Many of us have to fend on our own without caretakers or live with unsupportive family. We often lose our jobs. I had to quit my pervious job as a corporate lawyer due to pain and fatigue caused by long working hours and work stress.
There is very little in form of support outside the medical model. There are hardly any support groups available. I have formed a WhatAapp support group for that reason.
Stigma & lack of sensitivity in medical community
I had to struggle for many years to get a diagnosis. Like I had mentioned, I had lost my job. I was still meeting doctors charging high fees by dipping into my savings. Unlike many other people, I could still afford it.
I first consulted a number of orthopaedics and physiotherapists. They kept on diagnosing me with different things. I kept on getting tests done. I even did physiotherapy but that did not help with my pain. Finally, an honest orthopaedic told me that there is no reason that he could see for the widespread pain that I was going through. This was not a happy moment. I did not know what was causing the pain. I had not linked my fatigue to the pain till now. I was exasperated and at my tether’s end.
Against the popular advice given by doctors, I started seeking help from the Internet. Fibromyalgia seemed to fit most of my symptoms. When I told people close to me, they categorically dismissed it as paranoia. I decided to visit a well-known neurologist in Mumbai. The visit still makes me shudder whenever I think of it. The doctor suggested that I undergo a test. He did not tell me that it as an extremely painful test involving sending something like electric signals through the body. He should have advised to come with an attendant. After the test, he told me that I have Fibromyalgia. I felt short lived relief on hearing this. Finally, I had a diagnosis. I thought that my treatment could begin. Contrary to my belief, he just told me to go back home and “Google” about it. He told me that I need not come to see him again.
I have met several doctors since then who show similar apathy and stigma towards people with Fibromyalgia. If even the medical community treats Fibromyalgia warriors like this, we have little hope. Without proper medical care, our struggles are exacerbated.
Lack of legal provisions & rights
The Right to Persons with Disabilities Act recognises a list of disabilities for which various benefits under the Act extend. Fibromyalgia is not recognised as one of these disabilities in spite of the debilitating nature of this condition. There is no concept of reasonable accommodation in the workplace for people with Fibromyalgia in India. Jobs that are very demanding due to the stress or the long working hours are not conducive for people with Fibromyalgia. We also need clear provisions that prevent discrimination against people with invisible illnesses such as Fibromyalgia. The disability rights community needs to acknowledge our struggles and help us amplify our voices.
Conclusion – We can hope to create a more accessible and friendly environment for people with Fibromyalgia with more awareness among the public and the medical community. We also need legal and policy changes. All of this starts with two small steps – talking more about Fibromyalgia, and understanding people with Fibromyalgia.
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