Patient Story

Ajay

Hi, I’m Ajay, and I’ve been living with myositis for over five years now. When I was first diagnosed in 2019, I was terrified. It started with a simple rash on my face. I thought maybe it was just some irritation, but within a week, my body felt like it was failing me. I became so weak, I couldn’t even comb my hair or do basic things like get dressed or make a meal. It was like my body suddenly refused to cooperate, and I had no idea why.

When I went to the dermatologist, he thought it was acne and sent me off with sunscreen. I felt so frustrated because deep down, I knew something was wrong. Then, I saw an orthopaedic doctor for the muscle weakness, and he said I had osteoporosis and needed calcium supplements. I felt like no one was really hearing me, and meanwhile, I was getting worse.

"No matter how hard the journey may seem, there is hope and strength to be found in the support of loved ones and proper treatment."

It wasn’t until I went to Jaypee Hospital that I finally found someone who understood. I was referred to Dr. Sonal Mehra, a rheumatologist, and when she went over my symptoms, I could feel a huge weight lifting off my shoulders. She knew exactly what was going on. Hearing her say “You’re a textbook case of myositis” was strange—on one hand, I was relieved to finally have a name for what was happening to me, but I was also scared because I didn’t know what it meant for my future.

I was admitted to the hospital and discharged after three days, thinking I’d be okay. But just ten days later, I had a fall due to muscle weakness, and it was a hard one. I ended up with a brain hematoma, and that was a real low point for me. It was like I was losing control over everything. But I got through it, and after I recovered, I was put on a high dose of steroids for a year. Slowly, I started to feel better. I got stronger bit by bit. Today, I’m incredibly thankful to say that I’m living a pretty normal life again. I work, I spend time with my loved ones, and most importantly, I’ve learned to appreciate the small things that I used to take for granted. I still see my doctors regularly and follow their advice closely because I know how quickly things can change. For anyone going through this or something similar: I get it. I know how scary and overwhelming it feels. But I promise, there is light at the end of the tunnel. It’s not easy, and it can take time, but you’re not alone in this. With the right treatment and care, you can come out the other side. And I really hope that one day, with medical advancements, we can cure myositis for good. Just hang in there.