She Strengthens

A Life-Altering Diagnosis: Navigating Ankylosing Spondylitis

At 21, I Never Expected This

My life took an unexpected turn when I received a diagnosis of ankylosing spondylitis (AS) at the tender age of 21. I was working at a cafe, constantly on my feet, and commuting 45 minutes daily. One fateful morning in February 2017, I woke up to excruciating pain in my right hip. Initially, I brushed it off, but as the pain persisted, I began to limp and balance on one leg to get through my shifts.

The Journey Begins

Finally, my manager urged me to see a doctor, and I never returned to work. That marked the beginning of my year-long quest for a diagnosis. The day I received my diagnosis is still a blur – a mix of relief and depression that lingered for months. I struggled to come to terms with the fact that the pain would be a constant companion for the rest of my life.

Embracing Biologics

In April 2018, I started biologics treatment. My first infusion was a harrowing experience – I almost fainted while they inserted the IV line. Apple juice became my trusty sidekick for each subsequent infusion. As the youngest person in the infusion room, I felt like an outsider. But this was just the beginning of the many ways AS would alter my life.

A Life Apart

My diagnosis transformed my life in ways I never imagined. I went from being an active, social butterfly to being bedridden during flare-ups. My schedule revolved around doctor’s appointments, and I occasionally relied on a cane for support. I had to accept that I was different from my friends, with unique needs and limitations. I made the tough decision to give up alcohol, which triggered flare-ups, and bid farewell to my carefree bar-hopping days.

Coping with Isolation

AS can be a lonely journey. During flare-ups, I feel like none of my loved ones can truly understand my pain. They’re often at a loss for words, leaving me feeling isolated. I’ve become more of a homebody, seeking comfort in the familiarity of my surroundings and the tools that help me manage my pain. Travel anxiety has become a new concern, and I find solace in knowing that I have a support system waiting for me at home.

Prioritizing Self-Care

Through this journey, I’ve learned to tune in to my body’s needs and prioritize self-care. I listen to my body and take rest when needed, rather than pushing myself too far. I’ve found a sense of community on Instagram, connecting with others who share similar chronic pain experiences. These friends have become my lifeline, offering understanding and support during the toughest times.

A New Perspective

Ankylosing spondylitis has changed my life in ways I never thought possible. While I wouldn’t have chosen this path, it has helped shape me into the person I am today. I’ve gained a new perspective on life, one that emphasizes self-care, resilience, and community.