January 2025 was a month of civics lessons for anyone watching the news. We heard the term “executive order” more times than many of us care to count. While Americans are experiencing a crash course in U.S. government, that political term “executive order” can help pose an important question to…
As we flip the page to a new year, the pull of hustle culture on social media hasn’t seemed to change. Messages urge us to do more, achieve more, and push harder. But for those of us living with lupus, this mindset isn’t just unhelpful; it can be downright…
It’s amazing the number of times we hear people speak negatively about themselves or their circumstances. Staying free from the doldrums is a challenge when living with chronic, rare conditions. Honestly, who can stay positive when your body is home to an immune system that attacks and attacks and attacks?…
As another year draws to a close, I find myself reflecting not only on the milestones of the past 12 months, but also on the journey that’s brought me to this moment. When I look back at the years when I was so sick, growing up with unexplainable pain and…
Hester Prynne is being condemned for a private act that became a public sin. After being freed from jail, she’s led to stand on a scaffold before a crowd of villagers. She’s holding her 3-month-old baby and wearing an embroidered letter “A” on her cloak, both attesting to what she…
More than 20 years ago, Christine Miserandino explained living with systemic lupus erythematosus, the most common form of lupus, as having only a metaphorical “12 spoons” of energy a day. Her spoon theory does a great job of representing the tightrope walk of survival that…
Whether you’re healthy or living with a chronic illness, navigating a new friendship is always a delicate dance. For those of us with lupus (or possibly multiple autoimmune diseases), it can be difficult to explain why we’re suddenly MIA for days, or even weeks, at a time. Welcome to…
There are six white seashells covered in sand that have been washed ashore by Lake Pontchartrain onto Lincoln Beach in New Orleans. It took me nearly half an hour to reach the spot where they lay. Because I was headstrong and ready for a post-flare adventure, I climbed the levee…
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…
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…