A.S. Face 0150: Jess Axelson
My name is Jess, and I have Ankylosing Spondylitis. I’ve had symptoms for several years, and I was diagnosed about a year ago.
When I started having pain, it was shocking to me. I was young, only 24, and I had never had any kind of health problems. All of the sudden, I was in so much pain that I couldn’t get out of bed in the morning, and it made no sense. Within a month, I went from being able to do whatever I wanted to barely being able to walk. I had to start sleeping sitting up, and even then, my back felt like it had been frozen into solid ice, and I couldn’t even stand up without collapsing from the pain. It would take me 20 minutes to walk from one side of the house to another, and it felt like I had been punched in the chest whenever I moved my arms or took a deep breath. The idea of even going out for an afternoon of grocery shopping was akin to climbing a mountain; do-able for other people, but nearly impossible for me.
The thing about having an invisible disease is that people will think you’re crazy. You say you hurt, but you look fine, so you must be making it up. The psychological effects can be almost as daunting as the physical aspects of the disease. I had to fight my family, my friends, and my doctors to be taken seriously. My turning point was when my mother saw me struggling to climb a flight of stairs. She had dealt with rheumatoid diseases for most of her life as well, and she finally recognized that I had to be taken seriously. She became my advocate, and was really integral to getting my voice heard and getting me diagnosed and on medications.
I’ve been really lucky. I have a good support system, a top-notch doctor, and more than anything else, a diagnosis that caught this before it could really do a lot of damage. The key to living with AS is early diagnosis. But nearly as important is a positive attitude, which can be so difficult sometimes. I’ve had to really re-learn to love myself despite this diagnosis, especially on cold winter mornings when I feel like standing up and moving would be impossible, and I think back to a few short years ago when nothing could stop me. And I’ve discovered that, for me, it’s okay to be upset sometimes, but I can’t let it eat me.
Living with AS has taught me many things, and I can’t say that it’s been all bad. I’ve learned to slow down and really pay more attention to what my body is trying to tell me. Pain has given me more depth of character and understanding for other people. And it has also taught me that I’m more than what I ever thought I was or could be. I’ve lived more in the past few years than I ever had before, because I’m conscious of what I won’t be able to do if I don’t just keep going.
I have a lot in front of me. I want to travel. I want to adopt. I want to live a life that will make me happy, despite the pain, and despite what this disease might do to me in the future. And that’s what I want for everyone else who is dealing with this. When I first got my diagnosis, my mom burst out crying in front of me, and I felt like I had been given a life sentence. But it won’t be, because it shouldn’t be, and I won’t let it bring me down.
Stay healthy, stay positive, and keep moving forward.
Rochester, Minnesota United States of America