Beatriz
Faces of Axial SpA
Beatriz is a young woman with a huge amount of resilience and determination that belies the challenges she’s faced. She’s navigated years of unexplained pain and emotional turmoil. Her story is about the power of perseverance and self-advocacy.
Beatriz’s journey begins when she was just 12 years old. “They could never figure out what was going on,” she recalls, with a hint of frustration. Debilitating pain in her lower back, which spread to her legs and arms, turned simple tasks like, putting on socks, washing her hair, and just walking into daily challenges.
“We believe you’re in pain but it’s in your head”
Doctors, baffled by her symptoms, suggested the pain was psychological. “We believe you’re in pain but it’s in your head,” they told her, leaving Beatriz feeling isolated and doubted.
Without a diagnosis, she was prescribed painkillers, but the root cause remained a mystery. “I kept going for years, lots of X-rays, examinations and therapy,” she says, highlighting the relentless search for answers.
The lack of a diagnosis took a significant toll on Beatriz’s mental health. “Just keep going and don’t give up until someone finds out why you have,” is her advice, looking back on that time.
Finally, at the age of 16, Beatriz received a diagnosis: axial spondyloarthritis (axial SpA).
“When I heard I had an actual illness, I remember thinking, ‘I knew it! I am not crazy.”
The validation of her pain was a turning point, allowing her to move forward with appropriate treatment and support.
“I just thought the pain would never go away. I would never be back to normal, but the biological medication changed my life, because I feel normal with it,” she shares. “Now, with the right support and treatment, I can do everything. I forget that I even have an illness.”
But it wasn’t just about managing the physical symptoms. Beatriz also learned to accept her condition and prioritise her mental health. “Acceptance is key. I didn’t accept it for many years, but now I do,” she explains. “I’m able to sleep well, I’m able to walk, I’m able to travel. I’m able to do everything, a normal life.”
The impact of her diagnosis went beyond the physical. “Why am I doing this to myself? Like, stop doing this? I used to be like, stop creating pain for yourself,” she remembers, reflecting on the years she was told her pain was psychological. “So just being diagnosed was such a relief, I could have medication, the proper medication.”
While most days are good days, Beatriz still experiences flare-ups, particularly towards the end of the month when her next injection is due. “Sometimes I forget I have something. And then at the end of the month, when the pain starts, I’m like, oh yeah. You know, it’s kind of my reminder time to inject, you know?”.
Beatriz found a supportive community through NASS (National Axial Spondyloarthritis Society).
“I was blown away, because for so many years, I didn’t even know, I felt I was the only one.”
Her work life is flexible and understanding, allowing her to work from home during flare-ups. However, occasionally she encounters awkward moments in her daily life. “Maybe people find it weird that I’m young and on the bus, I sit in a disabled seat because I’m in pain, people give you looks,” she explains.
Beatriz’s advice to others goes back to the importance of early diagnosis. “You have a voice, and it needs to be heard. If you’re in pain, pursue a diagnosis, don’t give up.” She emphasises the importance of mental health support, alongside physical treatment. “Mental health is often overlooked, but it’s so important, especially when living with a chronic illness. We can get traumatised by pain”.
“Believe in yourself,” she urges. “If you’re feeling the pain, know that you’re not crazy. And just keep going and don’t give up until someone finds out why you have the pain.”
Today, Beatriz is dedicated to raising awareness about axial SpA and supporting others. “I want to help people who are going through what I did”. Her story is a powerful reminder that even after years of unseen pain, it’s possible to find strength, resilience, and a fulfilling life
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