The Journal
Notes from living with lupus
This is where I share everyday life with lupus—the plans that change, the adjustments I make, and the quieter moments in between. I’m still learning how to pace myself and live with a body that has its own ideas. I write honestly about where I’m at, even when I haven’t figured it all out.
-
The Weight of Five Words: “But You Don’t Look Sick”.
As Lupus is mostly an invisible illness, those of us living with it often run into a phrase that’s meant to be encouraging but feels like a punch to the…
-
How I Manage Life With Lupus When My Body Has Other Plans
I can spend the week looking forward to something, hoping my energy will hold up, only to wake up on the day and realise I can’t manage it. Then I…
-
What a Lupus Flare Feels Like for Me
I can look forward to something all week, prepare for it and still wake up too unwell to go. After 18 years with Systemic Lupus Erythematosus (SLE), that unpredictability is…
-
The Art of the Spoon Audit
A This Lupie Life Perspective Before I get out of bed, I’m already working out what I might manage. How tired do I feel? How sore are my joints? What…
-
When the Brain Fog Rolls In
It starts with me forgetting a common word mid-sentence while whoever I’m with waits patiently. Then comes the familiar feeling of looking at my to-do list as if through a…
-
The Flaw in the Scale
When I’m asked to rate my pain from zero to ten, I can usually give a number. What I find harder is knowing whether that number explains what the day…
-
Grieving My Past Self: Life and Career After Lupus
Coming to terms with a lupus diagnosis means confronting the grief of losing who you used to be. Here is an honest reflection on rediscovering identity and self-worth.