Living with Myositis: Denials and Delays in Chronic Pain Care
A man’s struggle with Myositis sheds light on the delays in chronic pain management, healthcare barriers, and systemic gaps in India’s health system.
In August 2020, Mr. Prashant, a 50-year-old businessman, started experiencing weakness and pain in his limbs. "At first, I brushed it off as post-gym session fatigue, but the symptoms persisted and worsened with time," said Prashant. His ordeal began with these subtle symptoms, but it didn't end there. His journey took a more distressing turn as swelling in his face and difficulty eating and swallowing soon followed. Concerned, he sought medical help, visiting several doctors. However, none could pinpoint the issue. "I saw many doctors, and they didn't know what exactly was wrong," he recalled.
The timing of his symptoms coincided with the COVID-19 pandemic. This delayed his evaluation as the protocols in place required everyone to be tested for the virus first. The complications and symptoms of the virus were not clearly understood, and therefore, all symptoms were assumed to be due to this mystery virus.
When all COVID-related tests came back negative, he faced a frustrating period of uncertainty. Not knowing the cause of the symptoms, the medical professionals he consulted initially tried convincing him that the generalized pain might be a psychological problem, leaving him in a state of distress as his condition deteriorated further.
For nearly four months, Prashant battled these mysterious symptoms, grappling with the unknown and seeing numerous doctors. He recounted, "After months of uncertainty, I was eventually referred to a Rheumatologist." After extensive testing and evaluation, he was diagnosed on 1st December 2020 with a condition known as Myositis.
Myositis, in simple terms, is a condition where the body's immune system mistakenly attacks the muscles, causing inflammation, swelling, and debilitating pain. It's a rare condition, but its impact can be profound, affecting individuals of all ages and genders.
Prashant’s diagnosis marked the beginning of his treatment. Initially, he experienced relief and felt like he had conquered the disease. However, fate had different plans. While taking medications for another illness, he suffered a severe relapse of the disease. This time, the symptoms were even more debilitating.
He found himself almost immobile, relying on a caretaker for basic tasks like eating and moving. The once independent and confident person now felt completely dependent on others. It was a crushing blow, and he struggled both physically and emotionally during this time.
The situation worsened when he contracted the COVID-19 infection shortly after starting a drug called Rituximab, a drug that suppresses the person’s immune system and thus increases the risk of infections. COVID-19 infection further compromised his health.
His mental health too was severely impacted as during this trying period, he was isolated from his family members due to COVID precautions. Prashant recalled, "This isolation was unbearable, and I was reluctant to be admitted alone into an isolation room. The experience was perhaps the most tumultuous phase of my life, with fear, uncertainty, and physical suffering looming large."
Despite the challenges, Prashant continued with the treatment under the guidance of his doctors. Slowly, the storm began to subside, and he was discharged home. However, the road to recovery was difficult, and he still couldn't regain his strength and independence. Mentally, he was in a dark place, contemplating giving up.
It was during this dark phase that he came across a story of Tri Bourne, a Tokyo Olympics volleyball player who had also battled Myositis. Just like Prashant, Bourne also had to see multiple doctors, undergo multiple tests, and live with debilitating symptoms before finally being diagnosed with Myositis.
The athlete's determination and eventual triumph inspired Prashant deeply. That tale of resilience ignited a fire within him, and he decided to fight back with everything he had. He began incorporating physiotherapy and exercises into his treatment routine, determined to regain his life.
With each passing day, Prashant made steady progress. Slowly but surely, he started to move his limbs, was able to swallow and work. The spark of life returned, and he was on the path to recovery. Supported by his family, friends, and medical team, he found renewed hope in life.
Myositis's impact goes beyond individual stories like Prashant's. It can weaken muscles, induce chronic fatigue, and make everyday activities like climbing stairs, grooming, or even rising from a chair a daunting challenge. Timely diagnosis and intervention are crucial for effective management and recovery. Early treatment often leads to faster and more complete recuperation, while others may face a journey marked by highs and lows.
However, various systemic challenges act as barriers to the early diagnosis and treatment of Myositis. Myositis is a rare condition, and diagnosing it requires specialized expertise and diagnostics. In India, most rheumatologists, the specialists best equipped to manage myositis, are concentrated in major cities. This geographical disparity poses a significant barrier to timely diagnosis for individuals in remote or underserved areas.
Moreover, there is a general lack of awareness about myositis within society. In response to these challenges, Myositis India, a nonprofit organization, has emerged. This organization is dedicated to raising awareness about myositis, providing support to those affected, and conducting research to improve our understanding of the condition.
The story of Mr. Prashant and his journey through myositis serves as a poignant reminder of the flaws in our healthcare system. Just like other rare diseases, myositis also exposes the inadequacies of our health system in diagnosing and treating diseases that do not affect the majority.
Mr Prashant faced difficulties despite being educated. He could afford to get evaluated in private healthcare facilities. However, it is important to keep in mind that a majority of the people in India are not as privileged as Prashant. Currently, there is a lack of credible data on the burden of this disease in India, and therefore, the extent of the suffering is still unknown.
Ultimately, this narrative leaves us with a resounding message: As a society, we must strive for better healthcare awareness, accessibility, and equity to ensure that anyone, irrespective of their social and economic status or rarity of the disease, doesn’t have to endure such difficult journeys in their quest for health and well-being.
Edited by Parth Sharma.
Image by Radhikaa Sharma.
