Johanna V. spent 8 frustrating years in pain before she finally received a diagnosis of ankylosing spondylitis (AS).
After experiencing her first symptoms in 2008, Johanna traveled from one doctor to another searching for answers.
Despite head-to-toe pain and swelling, Johanna recalls being dismissed by doctors who told her she was too young and healthy to have a serious condition.
It wasn’t until a new doctor joined her local rheumatologist practice in 2015 that someone took Johanna’s pain seriously. She received a spinal MRI and received her AS diagnosis soon after.
“Finally receiving the diagnosis was a relief,” Johanna said. “When the doctors didn’t believe me, I felt so alone and frustrated, and all the medical gaslighting eventually led me to deny my own symptoms. I became disassociated from my own body, as it was all too overwhelming to bear.”
Johanna’s prolonged road to diagnosis severely impaired her mental health. It wasn’t until she began therapy in 2019 that Johanna was finally able to accept her diagnosis and take steps to improve her life with AS.
More than anything, Johanna stresses the importance of self-empathy and self-awareness — skills she says she’s still working on herself.
In working to improve both her mental and physical health, she began @chronicallyjohanna, an advocacy Instagram account and blog dedicated to physical fitness for people living with chronic illnesses.
Living in Finland, Johanna appreciates the international AS support system she’s been able to build through Instagram.
“We all share transparently what it’s like for us day by day,” she said. “We discuss medicine, symptoms, mental health, relationships — everything that is affected by our illness.”
If she could give any advice to other people with AS, it’s to work on understanding that the diagnosis is not a death sentence.
“It is a progressive chronic illness, yes, but it’s possible to live quite fully even with this diagnosis. All you can do is proactively take charge of your life,” she said. “Also, you are not alone.”
Johanna is most motivated by her advocacy work and hopes to be a resource for people searching for answers themselves.
“I don’t know why this path with all its struggles was appointed to me,” Johanna said. “But at least I hope from my journey, someone might take away strength for theirs.”