Sheetal's Story

I was born in Kutch Gujarat, but have spent most of my life in Mumbai. I began to work at a young age – running events and camps for children.

My Ankylosing Spondylitis Journey

I was first misdiagnosed in 2008. It was only in 2013 when I started showing symptoms, that I began to seek treatment again. I initially made multiple visits to an orthopedician.  I even saw a homeopath who said I did not have Ankylosing Spondylitis because I did not have structural damage or bad posture! It was only when I landed up at a Rheumatologist’s clinic that I was diagnosed with Ankylosing Spondylitis.

Speaking to the doctor calmed me down. He put me on medication immediately. When I was first diagnosed, my life completely changed initially. I was shocked that I could not even stand. The pain would keep shifting all over my body – my knees, leg, back. Sometimes it was so bad, I would literally crawl to the bathroom. All the little things that I previously enjoyed, like going on excursions, stopped. I had to be on medicines just to do my routine work.

My mother was very worried about what people will think and say. I, on the other hand, was focused on getting rid of the pain. I spent hours online, looking for symptoms and treatment. It was through my online searches that I discovered Facebook patient groups for Ankylosing Spondylitis and later, WhatsApp groups. These groups opened me up to several other patients who were already at the stage of spinal fusion. Initially, it got me worried. But over time, these patient groups became a source of knowledge and emotional support, and like a family.