A Letter to my AS
Dear Steff’s AS,
Hi, it’s me, Steff. I want to write you a letter to air out both my grievances and my thank you’s. Sometimes I think you were sent to me just to bring hell to my life, but as I’ve learned in 3 years, you ended up bringing some good, too.
I’ll talk about the bad stuff first because I always try to end things on a good note. When you came to me you brought me a year full of the worst pain I’ve ever experienced. You made me unable to walk. I had to quit my job. You made me lose friends. I thought my life was over at 21.
My life went from working and hanging out with friends to doctor’s appointments and shutting myself out from the world. I would go months without really talking to anyone. I stopped connecting with friends because my life was swallowed up by pain.
As time went on, I reconnected with old friends, but it hurt because I wasn’t the same me anymore. I couldn’t go out to eat or go to bars and drink, like a normal 21-year-old. Instead, I mostly stayed indoors and saw friends for an hour at a time, the most I could handle.
The fatigue you have brought me has been debilitating. Some days I can’t get something as simple as cleaning my room done without needing a nap break. That’s followed by staying in bed for the rest of the night. I’m the only 24-year-old I know with this problem, and that’s extremely isolating at times. Over time, some things have gotten easier, though.
I started a website because of you, AS. I never thought I would be a person to have a website, but here I am. One day I decided that I wasn’t going to let you run my entire life anymore. I started blogging to connect with others with the same or similar problems as me.
That brought me here, to ankylosingspondylitis.net. I enjoy writing so much, and I had no idea that I did before you came into my life. So thank you for that. Thank you for helping me realize that I do have a talent, and that talent is writing.
I used this talent to write a book this year. Another thing I never thought I would do. I never really had a life’s goal before, but to be a published author is pretty cool, and I now have more goals than I’ve ever had. You’ve given me the drive to do something with my life.
I also felt the need to connect with others over Instagram. I’ve found so many friends on there, some not even with AS! The chronic illness community is the most empathetic, supportive, and kind community I’ve ever known, and I wouldn’t want to give that up for anything. Thank you for helping me find these wonderful human beings.
Goodbye, for now
I know that we won’t always get along, and that’s okay. I’m mostly used to you now. You’ll always be with me and I’ve accepted that fact. I hope you understand me a little more now, as I’m learning to understand you more every single day.
Thank you for listening,
Other than back pain and fatigue, what is the most common symptom that AS patients experience?