Lorna
Faces of Axial SpA
Lorna is a creative person who is pursuing a career in acting, writing and film. Her story is one of resilience and a quiet determination. She lives with axial spondyloarthritis (axial SpA), yet her story isn’t one of surrender; it’s a testament to how she’s embraced her reality, turning challenges into opportunities for living life.
Like many with her condition, Lorna’s journey began with a nagging sense that something wasn’t quite right. At 18, knee pain that lingered and returned intermittently was put down to running injuries. It was only when she was living in Paris, and the subsequent onset of persistent hip pain, that Lorna began to realise this was more than running injuries.
“When you don’t know of all the possibilities, you’re kind of like, oh, right, you’re thinking, oh well, this is because I’ve been running, and this is because of that”
The pain, initially confined to her right hip and radiating down her sciatic nerve, eventually spread to her lower back and then switched sides, to her left hip and began to impact Lorna’s everyday life.
Lorna’s journey to diagnosis, though quicker than many experience, was still a period of uncertainty. From the initial X-ray, suggested by her physiotherapist, to the final confirmation from a rheumatologist, it took six months.
“I take my hat off to the GP,” she says, acknowledging the crucial role her healthcare providers played. Those six months in limbo were the most challenging, marked by increased nerve pain and unpredictable flare-ups.
For Lorna, who had always been active, the diagnosis of axial SpA brought about a significant shift in her identity.
“I was athletic, and even though I didn’t love running, I was good at it. Now, I can’t run anymore, and some days I can’t even walk.”
Though her definition of being active has changed, She’s learned to listen to her body, understanding the importance of rest and self-care.
“People say to push through the pain, but with this, you can’t, and you shouldn’t feel guilty about it.”
Despite the challenges, Lorna embraces the positives. “In a weird way, it’s made me healthier,” she says, explaining how the need for regular exercise has become a powerful motivator.
Her experience has also fostered a profound empathy for others living with chronic conditions. “It’s hard to understand until you’ve experienced it, but I get it now. Some days are better than others, and having a fluctuating disability means sometimes you can do things, and sometimes you can’t.”
Adjusting to life post-diagnosis was a process of acceptance and adaptation. Lorna, who is looking forward to a career in acting, had to confront the reality that her condition might impact her backup plan of joining the police service. “I realised, you know, if I have AS that kind of gets rid of my backup because I wasn’t able to work in the police service now, because I can’t run,” she explains. Yet, her determination is strong, and she remains positive.
Lorna’s days now include managing pain, stiffness, and the occasional flare-up. She uses a cane when needed, navigating the reactions of others with grace. “I did have somebody call me a granny using the cane, and I’ve had a few people stop me on the street and say, God bless,” she recounts, highlighting the need for greater awareness and understanding of different disabilities.
Lorna enjoys swimming and stage combat. “The advice I would give is what I have received, like, make sure you keep active, but the most important thing is find something you enjoy keeping you active because if you don’t enjoy it, you’re not going to keep it up,” she says. Even stretching, which she admits she doesn’t love, is a daily practice. “Anything worth doing, is worth doing badly,” she reminds herself on the days when she can only do some of her stretching routine.
Lorna’s message is one of acceptance and perseverance. “You have to accept that you’ve got this and accept that sometimes you’re going to feel really sad about it,” she says. “But you have to also accept that you can gain something new by going out and exploring what your body’s capable of now.”
Lorna is working on a short film that explores the day-to-day experience of living with axial SpA. “The film will be a creative way of exploring that and highlighting that acceptance is key”, she explains.
“Get it checked out.”
For anyone experiencing similar symptoms, Lorna’s advice is clear: “Get it checked out.” She urges others to advocate for themselves, to push for the necessary tests and referrals.
Lorna’s journey is a reminder that even when life throws unexpected challenges our way, we can adapt, grow, and find strength in our vulnerability. Her story is a testament to the power of resilience, empathy, and the unwavering human spirit.
