Lupus has this uncanny way of presenting me — its host — to the world. Wow. That’s the first time I’ve referred to myself, a person living with systemic lupus erythematosus, as a “host.” Since my diagnoses of mixed connective tissue disease and Sjögren’s syndrome, I’ve been…
Living with systemic lupus erythematosus and Sjögren’s syndrome is like building a house out of fragments. I gleaned that idea from Paulo Coelho’s 2024 collection of stories, “Maktub.” It’s an inspirational companion to his classic novel “The Alchemist,” published about three decades ago. (Photo…
Disclosing your health status is one of the most fretful decisions in the chronic illness and rare disease stratosphere. For me, an afternoon tea helped to settle the fret, pull together a circle of friends, and set a chain of support in motion. When I faced a confirmed…
I was staring at the hospital walls, whispering to myself, “I don’t understand this pain.” Neither did the emergency room physicians and the hospital’s admitting physician. They’d done their best to pin down the “great imitator” using every blood test, scan, and opioid at their immediate disposal. At that moment,…
An interesting video is circulating on social media that I’ve seen more times than I can count. While it may be just a colloquial trend used to boost a content creator’s analytics, it still offers an interesting declaration. The video opens with a pensive-looking person with cursive text above their…
When was the first time you heard the words “advocate” and “advocacy”? According to Dictionary.com, to advocate means “to speak or write in favor of; support or urge by argument; recommend publicly.” And the Cambridge Dictionary says advocacy is the “public support for an idea, plan, or way…
We’ve all heard it. “But you don’t look sick.” There’s also “You still look good,” “That weight looks good on you (or off you),” and “I couldn’t tell you were that sick.” For quite some time, conversations among people living with lupus, which I have, or other chronic illnesses…
Since 1986, Delta airlines has consistently served Biscoff cookies during flights. According to Simple Flying, the airline serves about 85 million cookies a year. If you’ve taken to the skies in the last decade, you’ve probably had a pack or two (or four) of these oblong, cinnamon-ginger shortbread…
“You know, lupus thrives in extremes,” a rheumatologist told me. His tone was bland and matter-of-fact. “No, I don’t know much about lupus besides its misery,” I responded. “For one thing, your body will see elation and stress with the same intensity, and that may trigger flares.
Our paths to a lupus diagnosis can vary extensively. The symptoms that trigger a crisis may differ, as do the number of hospital stays and near-death experiences we endure before discovering that lupus is the cause. I first realized this truth while sitting in the most god-awful…