I am a 32-year-old lawyer who lives near Delhi and works with a wonderful NGO called IDIA Charitable Trust. I suffer from a chronic pain condition called Fibromyalgia that has symptoms like widespread pain, chronic fatigue, sleep disturbances, cognitive issues, and myriad other debilitating symptoms. It is an invisible illness. This means that it is not detectable by just looking at me.
Moreover, diagnostic tests like blood tests, scans, imaging techniques etc. cannot detect Fibromyalgia. It is a diagnosis by elimination, which means that if a person has these symptoms but all other illnesses have been ruled out, they are diagnosed with Fibromyalgia. The diagnosis is usually made by a neurologist or rheumatologist though there is no medical specialist who directly deals with conditions like Fibromyalgia because their cause is not known. There is very less awareness about Fibromyalgia in spite of the fact that nearly 2-4 percent of people may be affected by it. The term Fibromyalgia means pain in muscles and fibrous tissues (tendons and ligaments).” I also have Bipolar Affective Disorder Type-II which further exacerbates my symptoms.
My Tryst With Pain
My tryst with Fibromyalgia started with little pains and aches in my knees, back, arms and other places. For three years, I ran to meet doctor after doctor. Some blamed my weight. Others told me to exercise. Some others told me that it is all in my head. Others told me that I am fine and there is no reason for the pain. I was disbelieved and ridiculed.
I was terrified and in despair. I had reached a state where I would spend my entire weekend in bed without getting out. I had to quit because I couldn’t manage the work stress and long working hours. Around that time, I finally went to see a neurologist. He sent me for a painful diagnostic test in which they send electrical impulses through the body. He did not warn me about the test. I did not have anyone with me and had gone alone. I nearly fainted from the pain. After the report, he told me that I have Fibromyalgia. I felt slightly relieved that I have a diagnosis, but it was short lived. He refused to help me. He did not prescribe me any medicine nor told me anything about the illness. He told me to go and read about it on the internet. I became even more scared and dejected. I was living away from family without support. I had been diagnosed with a life-long chronic illness without any guidance about managing it.
'You Don't Look Sick...'
The hard-hitting truth is that there is substantial lack of awareness about conditions like Fibromyalgia even among the medical community. Even lesser can be expected from the general public. People gossiped that I don’t look sick. Some said that I couldn’t handle a corporate job. I had to move back in with my parents. I felt like I had lost everything. My life, my home, my job, my relationship. I slipped into depression.
With time, I have learnt to better manage my illness. I have medical professionals who believe me. I take medicines and supplements. I exercise and have a social life. It took me years to be able to lift my head again. I now hold a job that I am proud of.
Reach Out for Support
I still suffer from feelings of guilt and self-blame. I constantly remind myself that I am not weak. In fact, it takes strength to rebuild your life with an invisible illness. I have set up a support group for people with Fibromyalgia. I want to spread more awareness about this harrowing health condition that may not kill anyone, but substantively impacts the quality of life of those who battle it. Some of us lose jobs, some lose family and all of us lose a little bit of ourselves. I still think of days before this illness struck me and wish I could live like that. However, I have learnt to find peace in my new, more balanced life where I get to do meaningful work.
Our illnesses are invisible. We keep quiet and put up a brave face to avoid discrimination, ridicule and hatred. We shouldn’t have to. We should be able to talk about our experiences without the fear of stigma.
We need not be invisible. Let’s hope that no one has to feel like that 25 years old girl in a doctor’s office who was told she had Fibromyalgia without any kindness or help. Let’s hope that we don’t need to run around for years to get a diagnosis. Let’s all speak up and spread awareness about invisible illnesses. If you know someone who suffers from one, offer them a helping hand or just some understanding and kindness. We are the invisible warriors. Our illnesses are invisible, we need not be.
(Swati Agarwal is a lawyer who suffers from Fibromyalgia and Type-II Bipolar Affective Disorder. She has recently formed an India wide support group for people with Fibromyalgia)
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