How Ankylosing Spondylitis Changed My Life

I guess I am the first from India to write my story on this forum. I hope all the AS warriors are doing well, and if not, I hope everything will be fine soon.

What is wrong with me?

I would start my story when I was 20. I remember, after sitting for a long time, I took some time to stand up straight. Sometimes, when I would keep my leg on the floor, I felt a lot of pain. Sometimes, in the middle of the night, I would wake up with severe pain, unable to move my body even a little, and it used to feel like I would die the next minute.

I had no answer to this. I used to think that this was happening to me because I was not exercising and I was eating junk food. I used to buy painkillers from the pharmacy and take them every day.

The pain was getting worse

Time passed, and my pain started increasing from once a month to once a week to every day. The pain felt like hell. At times, I thought it was sciatica or a slipped disc, but I didn't know what would happen further.

I was doing my MBA at the time when the pain started happening every day. I started missing lectures due to pain and started avoiding plans because of fatigue. And I had no answer as to why I didn't feel like doing anything.

I finally saw a doctor

One cold night in January 2020, the pain was so severe that I wasn't able to move a bit, and it continued for a week. I was locked in my apartment alone. It took me five minutes to go to my door from my bed to take the food parcels. That was when I was sure that it was something serious.

Since I had no idea what rheumatology was, I took an appointment with an orthopedic. He ran many tests, including all the blood tests, X-rays, HLA-B27, CRP, and ERS. That was the first time I heard these terms, but now I have to go through these terms every six months.

Putting a name to my pain

All the reports came back, and he told me, "Boy, you have ankylosing spondylitis." I asked him to repeat that since I didn't understand that word. He told me, "It's ankylosing spondylitis, a type of arthritis."

Since I was hearing it for the first time, I asked him, "So, will it take my life? Because my pain feels like that daily." He told me, "No," and that "The pain may feel life-threatening, but it is not." He said, "We can control this through medications and exercise, and you can lead a normal life."

I had no idea whether to be happy that I got a name for my pain or to be sad because I had to live my whole life with this. This was just the time when I got the name to my pain, and the next two years were like hell for me. I finally understood how bad AS could be and how much it can affect our lives.

Thank you and See you in part 2, Until then Good Bye.