While the journey of every fibromyalgia patient is different, spreading awareness about its symptoms and treatment is important. For a working professional, Jaya Mehrotra, fibromyalgia was a hurdle that she knew she needed to cross in order to achieve her dreams and help others. Fighting the chronic disorder for a decade, she shares her journey with Health Shots to raise awareness about a condition that not many people may know of.
For the unversed, fibromyalgia is a condition in which the body aches all over and causes symptoms such as sleep problems, fatigue and mental distress. People suffering from the condition are more sensitive to pain than people without it.
After struggling for a long time with unrelenting pain and headaches, Jaya, a leadership coach and founder of Women Leadership Circle was diagnosed with fibromyalgia in 2013. It was an isolating and frustrating journey as people find it hard to recognise and validate the “realness of the pain” and other symptoms.
Initially, she was plagued with headaches, excruciating body aches, and chronic fatigue that were misdiagnosed as anxiety and migraine. Even when the pain was leaving her utterly dysfunctional, she was unable to understand or manage the condition. “My neck was in constant spasm and stiffness. I couldn’t understand what was happening to my body and no one could identify the cause of my suffering. The misdiagnosis of anxiety and migraines only added to my distress, as the prescribed medications provided no relief. It was a harrowing experience, feeling like no one truly understood what I was going through,” she shares.
What felt like an endless journey came to a stop when her doctor finally listened to her and took the time to investigate the symptoms. She was diagnosed with fibromyalgia. “The diagnosis was a double-edged sword, both validating my struggles and yet also highlighting the long and difficult journey that I had been on.”
One of the biggest challenges of living with fibromyalgia is that there are no specific diagnostic tests for it, and many doctors may misdiagnose it as anxiety or other mental health conditions. This can delay proper treatment and exacerbate the patient’s suffering. Despite the lack of visible symptoms, it is essential to recognise and validate the symptoms that come with fibromyalgia.
While living with an invisible illness like fibromyalgia can be isolating and frustrating, it is essential to spread awareness about the condition and its impact on an individual’s life. By increasing understanding and recognition of fibromyalgia, we can help others recognise and support those living with the condition. Seeking support from healthcare providers, loved ones and communities can also help manage the symptoms effectively.
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“As someone who has been living with fibromyalgia, I understand the challenges of receiving a correct diagnosis and being validated for the severity of the symptoms. However, with the right support and resources, individuals with fibromyalgia can lead fulfilling and meaningful lives,” she adds.
A leadership coach, Jaya has learned to navigate through the daily challenges that come with the health condition. While it can be challenging, she says, “It has also taught me to be my own advocate, to listen to my own body and to have a higher degree of self-awareness, intuition and empathy for others.”
She adds that fibromyalgia has made her a highly sensitive person. “On one hand, it has been a tremendous asset in coaching others, as I am highly intuitive and can recognise energy and emotions very well.”
“On the other hand, there have been instances when my heightened sensitivity has made it challenging to function in certain environments. For example, during a trip to Times Square in New York City with close friends and family, the flashing neon lights triggered my symptoms and I experienced intense fatigue, feeling like a deflated balloon. Similarly, a trip from Mahabaleshwar to Mumbai in a car with rough, uneven roads triggered my symptoms, and I experienced nausea and ended up throwing up once I reached home,” recounts Jaya.
While these symptoms can occur, she says the most disheartening aspect of living with fibromyalgia is when your loved ones fail to understand your agony.
“People around me used to dismiss it as being ‘all in my head’. For the longest time, people believed I should just meditate and ‘think positively’ to overcome my symptoms. Although it has not been easy, it has taught me valuable lessons about self-care, resilience and empathy. I hope that by sharing my experience, others will gain a better understanding of the challenges faced by those with chronic conditions and learn to approach them with greater empathy and understanding,” she adds.
Living with fibromyalgia can be a challenging journey full of ups and downs. But like most health conditions, it can leave people with life lessons.
From her own experience, Jaya says, “It taught me to confront my limitations and rethink my approach to life. It was a journey of self-discovery that led me down a path of holistic healing and purposeful living. In these 10 years, I realised that I needed to get a better understanding of my body. I started being self-aware while trying to make healthier choices. I paid attention to what I ate, how much rest I got, and what kind of activities I engaged in.”
Learning from Jaya’s journey, the key is to find the right treatment for fibromyalgia, which can be difficult at times but not impossible. What might work for one person may not work for another. However, sometimes you have to be patient, persistent, and willing to try unconventional treatments and find a purpose in life.