“When I was diagnosed with ankylosing spondylitis at 22, I was overwhelmed. Before the pain came, I’d been fit and healthy, with an active social life and a tough job in the restaurant industry. I was used to being on my feet all the time, go go go. It had never occurred to me that a chronic illness like this was even a possibility.
I almost immediately isolated myself from friends and my entire support network. I turned inwards and tried to figure it all out on my own. What does this mean for me? What’s my life going to look like? Who am I going to be? I didn’t find many answers.
It seemed like so many doors were closing. The only clear thing was that the life I’d expected wasn’t the life I was going to have. But the more I read about ankylosing spondylitis, the less I saw myself in the stories. Everything was so clinical, and I just wished for something relatable. It was easy to find information about symptoms, treatments, and prognosis, but nothing about living with this disease as a young woman.
I started blogging about my health journey to put out into the world the kind of story I’d wished for. I hoped to provide a sense of community so that the next person wouldn’t feel so alone. Little did I know, starting that blog would launch a whole career, transform me, and answer all those questions I’d asked myself.
“I’m eager to do anything I can to change the face of chronic illness.”
My life today, when I’m not playing Stardew Valley or Mario Kart, is all about health advocacy, community, and communication. I’m on social media talking about illness almost daily. I’ve gotten comfortable being visible with my disability. People reach out surprisingly often saying that, thanks to my page, they’ve gotten more comfortable with their own disability. It’s incredible.
And the more open I’ve been, the more opportunities have found me, whether I’m writing for WebMD or rocking a feathery pink jacket at the Arthritis Society fashion show fundraiser. I’m eager to do anything I can to change the face of chronic illness, to advocate for needed change, and to help people overwhelmed by a new diagnosis see that they’re not alone.”
Steff is a proud member of the Patient Voice Ambassador Program.
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