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…
Ah, the changing seasons. Spring is finally here, and for many people, it’s an exciting time of rejuvenation, of shedding winter coats and embracing the sun’s warmth. But for those of us with chronic illnesses like lupus, each seasonal change can feel like stepping into a battlefield of unpredictable…
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…
In the past three decades of dealing with unpredictable health issues, a pain point has reared its head over and over again for me. After countless conversations with other chronic illness warriors, I know it’s an ongoing struggle for many: employment and financially caring for ourselves. The constant struggle for…
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,…
If you, like me, live with chronic illness, have you ever felt like you think about your mortality more often than your healthy friends and family members do? Since before my lupus diagnosis, when I knew something was going haywire in my body, I’ve given a lot of thought…
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…
At the start of each new year, I find myself awestruck by what it could bring to my life. While social media has a funny way of making us feel an overwhelming pressure for a “new year, new me,” I’d like to share with you a gentle reminder: Life with…
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…