My Story
Living with Systemic Lupus Erythematosus
Real Life Experience
The Relief of a Name: My 18-Year Journey with Lupus and the Path to Self-Love
For over a decade, I kept this story tucked away. I waited for the "perfect" moment, the perfect words, and the perfect state of health to share it. But after years of navigating the highs and lows of chronic illness, and finally making the conscious effort to build my own self-love, I’ve decided to put perfection aside.
Today, I am finally publishing. Whether you are a fellow "Lupie," a caregiver, or someone seeking answers, I welcome you to this community.
The Unexpected Joy of a Diagnosis
Eighteen years ago, I sat in a doctor’s office and heard the words: Systemic Lupus Erythematosus (SLE).
Most people would receive that news with fear. My reaction? Pure, unadulterated relief. For years, I had bounced from doctor to doctor, describing symptoms that felt invisible to the medical world. I had reached a point where I stopped asking for help, convinced that perhaps it was all in my head.
My GP was taken aback by my smile. She knew the gravity of what a Lupus diagnosis meant for my future, but in that moment, all I felt was the weight of self-doubt lifting off my shoulders. I finally had a name for the enemy.
Outrunning the Reality: The Triathlon Phase
In the first three months following my diagnosis, I went into overdrive. I completed three mini-triathlons, fueled by the addictive rush of crossing the finish line. I wanted to prove to myself—and perhaps to the world—that Lupus wouldn't change me.
However, the three months of gruelling recovery that followed my third race forced a reality check. I realised that while my spirit was willing, my body was fighting a different kind of race. Triathlons and SLE were not the ideal combination, and I had to learn the hard way that "pushing through" isn't always the answer.
The Wake-Up Call: 2014
For a few years, I managed to keep Lupus in the back of my mind, focusing on my career and maintaining a facade of normalcy. That changed in 2014.
I was hospitalised for four weeks with complications that shook me to my core: heart failure and issues with my liver, kidneys, and blood. It was a terrifying reminder that Lupus is not a condition you can simply ignore. It was the catalyst that changed my life forever, forcing me to prioritise my health and listen to what my body was desperately trying to tell me.
Building a Community of "Lupies"
This blog is the result of twelve years of reflection, three failed relationships that taught me the importance of self-worth, and a newfound commitment to self-love.
My goals for this space are simple:
To Raise Awareness: To shed light on the complexities of SLE and the "invisible" struggle.
To Provide Resources: To offer a hand to those newly diagnosed who feel as lost as I once did.
To Build Connection: To create a haven for Lupies, our loved ones, and our carers.
Living with Lupus is a journey of constant adjustment, but it doesn't have to be a journey you take alone. Thank you for being here. Let’s navigate this together.