Living with Systemic Lupus Erythematosus

From Diagnosis to Acceptance: 18 Years of Living with Lupus and Learning to Embrace a Different Life

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 slowly learning to accept the person I am and the life I have now, I’ve realised that waiting for perfection only means waiting longer.

So, I’m finally sharing my story.

Whether you’re a fellow “Lupie,” someone who loves or cares for someone with lupus, or you’re still searching for answers of your own, I hope you find something here that makes you feel understood, less alone, or simply reminds you that someone else gets it.

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 comes from eighteen years of looking back, three failed relationships that taught me how much my own worth matters, and deciding it’s time I learned to love myself.

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 simple resources to those diagnosed who feel as lost as I once did.

To Build Connection: To create a place of understanding and no judgement 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.

Are you a fellow Lupie?

Whether you are newly diagnosed, managing a flare-up, or looking for honest survival guides, my inbox is always open. Let us share the quiet victories and the heavy days.