If you have a chronic illness, I imagine you’ve experienced a moment of guilt at some point because you weren’t able to get out of bed due to a flare or other ongoing symptoms. I even bet you’ve felt that way more than once. I’m more accepting today…
“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.
Picture it: You’re deep in a lupus flare and have been in bed for weeks. In the silence, you think, “What is my purpose if I’m constantly sick?” or “How do I find meaning in my everyday life?” I can’t count how many times the frustration of being…
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…
It can be a sticky topic — working (or not working) when living with a chronic illness. We travel so many journeys when we navigate this aspect of our lives. The fact is, each one of us will, at some point, experience our health intersecting with our ability (or inability)…
Six years ago, I met retired Army Maj. Toni Grimes at a busy Phoenix coffee shop. It was my first conversation with a lupus advocate since my own diagnosis in 2016. I made it a point to arrive before her. I needed to soothe a sneaky, queasy feeling…
Having lived with lupus for decades and having spoken to countless chronic illness warriors over the years, I’ve realized that while our varied symptoms hit us differently, we all face one unifying dilemma: toeing the line of looking sick enough that medical personnel and others take us seriously while…
For me, writing has always been equal parts advocacy and therapy. I wanted to help others but I also needed a way to deal with the vortex of emotions swirling inside of me. Early on, I wrote regularly about all the struggle, pain, and heartache associated with…
Have you noticed that certain stressors, environmental factors, lack of sleep, or foods seem to cause lupus symptoms to suddenly express themselves, or current symptoms to increase in severity? If so, you may have identified a trigger. When I was diagnosed with systemic lupus in 2001, I’d…
My sleeping pattern is off at the moment, and I’m exhausted. As someone who already struggles to feel rested due to lupus fatigue, it feels a bit like the sky is falling. In the long run, I’ll probably look back at today and realize it wasn’t that bad.