My Backstory is part of a new campaign about ankylosing spondylitis (AS) awareness from the nonprofit patient community CreakyJoints. The videos in this campaign were produced with support from Novartis Pharmaceuticals Corporation.
To find out if your chronic back pain could be AS and to watch more videos, visit creakyjoints.org/backpain.
Hannah’s journey to getting diagnosed with ankylosing spondylitis, a type of inflammatory arthritis that primarily strikes the lower back and pelvis, began when she was 23 with a strange low-grade fever.
“I started running a fever. And it never went away for a year,” she recalls.
Her primary care doctor connected her to multiple specialists to figure out what was wrong. As doctors diagnosed her with various infections and ailments and hypothesized others, her symptoms persisted.
(Hannah’s medical mystery helped inform the plot of our new back pain web series, My Back Is Killing Me. And she and other AS patients star in it, too! Watch episode 1 here.)
“I had lots of people tell me it was mono, which I’d already had. Doctors thought it was lupus for a while. I thought it was lupus for a while,” Hannah says. “I had fought the idea of having fibromyalgia for a long time because I knew it was something that’s a catchall diagnosis that they give to women when they don’t know what’s wrong with them.”
Finally, Hannah got in to see a rheumatologist, who quickly diagnosed her with ankylosing spondylitis. She was surprised, to say the least.
“For me, AS was such an out-of-the-blue diagnosis,” she says. Not only had Hannah never heard of it, but when you read about AS, she says, all you read about is back pain. “And I had back pain and I do have back pain, but it was never my main complaint. When I’m presenting with mostly fever and fatigue and just this general ‘I don’t feel well’ feeling, it makes sense to send me to an immunologist or an infectious disease specialist. But the fact that I eventually got into a rheumatologist, of course, was probably the only way I was ever going to get diagnosed.”
When Hannah’s rheumatologist shared her diagnosis, she felt oddly relieved.
“I was sitting there with this huge smile on my face, which is ridiculous when someone’s telling you what’s wrong with you,” she recalls. “To have someone finally validate it … You feel like you’re part of the world again because the world has a name for what’s going on with you.”
Hannah’s Message for Fellow Ankylosing Spondylitis Patients
Hannah says joining and embracing the AS community has really helped her adjust to living with this chronic disease.
“The AS community is incredible. People are really there for you and to invite you in, and they accept you,” she says. “I don’t think I’m sad about having AS. I’m sad about not getting diagnosed sooner. All that time that I spent doubting myself and feeling bad about myself. My life doesn’t need to look like other people’s lives to be great, so I’m perfectly happy.”
Could your chronic back pain possibly be ankylosing spondylitis too? Learn more at creakyjoints.org/backpain.
For more stories about people living with ankylosing spondylitis, watch Roz’s Backstory and Jed’s Backstory.