The Chapter I Didn’t Write: On Lupus, Gaslighting and Finding My Voice
If my life were a novel, Lupus would be the antagonist that showed up uninvited in the early chapters. But here’s the twist the reader wouldn’t see coming: it wasn’t the villain that defined the story; it was the protagonist’s fight to reclaim the narrative.
My own story started at thirteen. The diagnosis was neatly packaged and presented to me as “lupus of the skin.” It felt manageable, like a subplot. But for years, a deeper, more insidious plot was unfolding beneath the surface. I was told the fatigue was laziness, the pain was growing pains, the feeling that something was fundamentally wrong was all in my head. I was gaslit by a dermatologist, made to feel like a character in my own body who was also an unreliable narrator.
Then, at twenty, the narrative shifted dramatically. The words were different, heavier, and terrifyingly final: Systemic Lupus Erythematosus (SLE), attacking my vestibular system. The “skin-deep” subplot was gone. This was a full-body, full-life takeover. The ground beneath me felt like it was spinning, both literally and figuratively.
But in that diagnosis, in that terrifying clarity, I found my power.
They had given me a label, but they had also given me a key. The years of being dismissed hadn’t made me weaker; they had forged a resilience in me I didn’t know I possessed. I was no longer a confused girl being told she was dramatic. I was a young woman with a name for her enemy and a fierce, burning will to fight.
To my fellow warriors in this group, you who know the battle better than anyone, I want to say this:
Your pain is not your identity. It is a chapter, a difficult, draining and often infuriating chapter, but it is not the whole book.
The days you spend fighting your own body are not lost days. They are the pages where your character is built. They are where you learn a depth of strength that those with easy health will never comprehend. You are not “just tired.” You are a soldier resting between battles. You are not “being sensitive.” You are a warrior with a nervous system that is constantly on high alert.
They may have gaslit you, dismissed you and made you question your own reality. But here, in this community, we believe you. We see you. We feel the same storms in our own bodies.
Let’s refuse to let this illness be the title of our story. Let’s be the authors who write about Lupus as a force we encountered, a challenge we met with unimaginable courage.
Our story is not one of sickness. It is a story of survival. It is a story of finding light on the darkest of days and holding onto it with everything we have.
Keep writing your story. One brave, beautiful, resilient day at a time.
With so much love and solidarity,
A Fellow Author of a Resilient Life
~ Aalia Davids 💜