Living with Lupus

Vachasamrita

A Journey from Patient to Advocate At 13, I found myself bedridden, relying on others for the simplest tasks. By 15, hospital rooms became my second home, and at 16, I realized that beyond the physical pain, the lack of patient support and advocacy in India was an even greater battle. Diagnosed with refractory lupus nephritis, I have faced years of organ involvement, aggressive treatments, and the unpredictability that comes with a chronic illness. Lupus is an autoimmune disease where the body attacks itself, causing widespread inflammation. For me, it has meant severe kidney involvement, chronic pain, and navigating life under immunosuppression. The Power of a Patient-Led Movement When I co-founded Lupus Trust India with 2 other Lupus Warriors and Dr. Padmanabha Shenoy, it wasn’t just about awareness—it was about creating a patient-driven movement. 

In a healthcare system where systemic lupus erythematosus (SLE) is still misunderstood, support groups play a critical role. We don’t just provide medical guidance; we empower patients to reclaim their dignity, access the right care, and build a community that understands the silent struggles of living with an invisible illness. The importance of peer support, advocacy, and structured patient representation cannot be overstated. No one should have to fight this battle alone. 

 A Message to Arthritis Patients :

 Whether it’s lupus arthritis, rheumatoid arthritis, or another rheumatic condition—pain, fatigue, and disability can be isolating. But your life is more than your disease. While medical management is essential, equally important is your right to a fulfilling life, access to proper pain relief, and social acceptance. Chronic illness warriors are often asked to be “strong,” but true strength also lies in asking for help, in advocating for yourself, and in finding your own pace in a world that doesn’t always slow down for us. Arthritis doesn’t discriminate—it can affect a child barely in their teens or an elderly person in their twilight years. When I was 13, bedridden with arthritis, people around me unintentionally made me feel pathetic. They thought I was “too young” for this disease. But no! Educational institutions, workplaces, spouses, caregivers, and society at large must understand that arthritis is not just an “old person’s disease.” It’s a symptom of a deeper autoimmune or inflammatory condition, and its impact goes beyond age. True support lies in recognition, acceptance, and inclusivity—not just for treatment, but for dignified living. 

Celebrating Mission Arthritis India Mission: Arthritis India (MAI) is a trailblazer in patient-led healthcare in India. Celebrating 25 years of advocacy, support, and resilience, MAI has set a benchmark for how patient communities can drive real and long term change in awareness,

policies and access to treatment. As a fellow patient leader, it is an honour to witness the impact of MAI’s work, and I look forward to collaborating in building a stronger, more inclusive future for chronic illness warriors.

A special acknowledgment to Deepa Mehta and Sharayu Tai for their unwavering dedication to this cause, and heartfelt regards to Dr. Arvind Chopra for leading the medical community in supporting patient-led initiatives, ensuring that those living with arthritis and other rheumatic diseases have our voice amplified and heard.