My name is Rakesh*, and my journey with HIV began in early 2004. It started with small signs—loose motions, itching on my skin—but soon, my right leg began to tremble uncontrollably. It felt like the earth beneath me was shaking. I was scared and confused. When I went to AIIMS in Delhi for tests, the doctors told me to get an HIV test. When the results came back positive, it was like the ground vanished beneath my feet. I was diagnosed with HIV.
I had already told my family about my health concerns, so when the news came, they were shocked but stood by me. Their support was my first light in the darkness. The elders in my family managed their anger and frustration, then calmed down to support me. But the fear of what lay ahead was overwhelming. I was told the medicines would cost seven to eight thousand rupees a month, and there was no government scheme to help at that time. I couldn’t start treatment immediately.
Life became a daily struggle. I was losing weight, my health was deteriorating, and the stigma was crushing. I had to keep working as a daily wage laborer to support my family, but my body was failing me. Traveling to hospitals was expensive and exhausting. Sometimes, I felt like I was moving ten steps backward for every step forward. My weight dropped drastically, and I was hospitalised multiple times with fever, diarrhea, and severe itching all over my body.
The emotional toll was immense. I felt isolated, ashamed, and hopeless. Society’s judgment was harsh, and even some healthcare settings were unkind. But I was fortunate to find pockets of compassion—doctors and staff who treated me with dignity. Still, the fear of rejection and discrimination haunted me.
In 2005, I finally started treatment. Slowly, I began to regain strength, but the journey was far from over. I had to travel between Delhi and Bihar for care, balancing my health with the demands of daily wage work and family responsibilities. The socio-economic challenges were immense. Accessing care meant long journeys and financial strain, yet I persevered.
In 2020, when I was admitted with gallbladder stones and jaundice, the MSF team became my lifeline. They provided not just medical care but emotional support. Their slogan, “Garima ki Kiran” (Ray of Dignity), truly reflected the care I received. The staff, especially Kaushalya Didi and Mukesh Ji, became like family, offering kindness and encouragement when I needed it most.
Living with HIV taught me resilience. I survived years without treatment, faced life-threatening complications, and battled stigma. But I want others to know: this is not the end. With proper medication, timely treatment, and a disciplined lifestyle, people living with HIV can lead fulfilling lives. I urge my fellow patients not to lose hope or shrink away in fear. Take your medicines on time, eat well, and live with patience and dignity.
My experience has transformed me. I now stand as a source of strength for others facing similar battles. I openly share my story to break the silence and stigma surrounding HIV. MSF’s education and mental health initiatives empower us to manage our health and seek help without shame. I am grateful to be part of a community that cares and supports each other.
To anyone hearing this, remember: HIV is a chronic condition like any other. Just as people take lifelong medication for thyroid or diabetes, we must take our medicines consistently. Life with HIV is not a sentence; it is a journey of courage, hope, and resilience. Together, with support and awareness, we can overcome the challenges and live with dignity.
Thank you for listening to my story.
*Name changed for privacy and confidentiality purposes.
