18 Years of Living with Lupus

A little about me

I’m Trudy, and for over a decade, I kept my story tucked away. I was waiting for the right words, the perfect moment, or a healthier day to finally share it.

Eighteen years into living with Systemic Lupus Erythematosus (SLE), I’m still learning how to live a life I hadn’t planned. Part of that has been learning to value myself when life looks very different from what I expected. And part of it is accepting that I don’t need to have everything worked out before I start talking about it.

So here I am.

Whether you’re a fellow “Lupie,” someone who loves or cares for one, or you’re just beginning to search for answers, you’re welcome here. Your experience may be different from mine, but I hope you’ll find something that helps you feel understood.

When a diagnosis brought relief

Eighteen years ago, I sat in a doctor’s office and heard the words Systemic Lupus Erythematosus. My reaction surprised my GP: I smiled.

After years of going from doctor to doctor, trying to explain symptoms nobody seemed able to make sense of, I finally had an answer. I’d started doubting myself. At one point, I stopped asking for help because I wondered whether it really was all in my head.

I wasn’t happy to have lupus. I was relieved to know there was a reason for what I’d been feeling. Having a name for it meant I could finally begin to understand it.

Trying to carry on as before

In the first three months after my diagnosis, I completed three mini-triathlons. I loved the rush of crossing a finish line, and I was determined to prove to myself—and probably everyone else—that lupus wasn’t going to change my life.

Then came three months of recovery.

I wanted to keep going as though nothing had changed, but my body couldn’t keep up with what I was asking of it. For me, pushing through came at a cost I hadn’t understood. Learning to recognise my limits, and actually respect them, would take much longer.

When things changed in 2014

For a few years, I focused on my career and tried to keep lupus in the background. From the outside, I did my best to make life look normal.

In 2014, I spent four weeks in hospital with heart failure and complications involving my liver, kidneys and blood. It was frightening, and it changed what everyday life could look like for me.

My health needed more space in my life than I’d been giving it. That wasn’t an easy adjustment, and it didn’t happen all at once. I’m still learning how to make room for what my body needs alongside the things that matter to me.

Why I’m sharing my story now

This space has grown out of years of keeping things to myself, living with lupus, and slowly understanding my own worth. Two relationships that ended have also been part of that—learning to accept myself and recognise that my needs matter.

I don’t have a neat ending or a formula for living well with chronic illness. I have my experience, things I’m still working through, and a willingness to talk honestly about both.

Through This Lupie Life, there are three things I hope to offer you:

1. Words for what others can’t see

Fatigue, pain, brain fog and the effort it takes to get through an ordinary day can be hard to explain. By sharing what these experiences look like in my life, I hope to help you put words to your own—and help the people who care about you understand a little more.

2. Something useful for the days that feel hard

When you’re overwhelmed, even knowing where to start can feel like too much. Here you’ll find personal reflections, practical resources and small ideas to explore at your own pace. These come from lived experience and general information, rather than medical advice, with room for you to decide what fits your life.

3. A place where you don’t have to pretend

You don’t need to be feeling positive or have everything under control to belong here. I want this to be a place where we can speak honestly about the difficult days and still make room for the good ones. Whether you live with lupus or care about someone who does, there’s space for you here.

Some of what I share may feel familiar. Some of it may be different from your experience. I hope you’ll stay, read a little, and find something that speaks to you.

I’m glad you’re here.

Trudy