Celebrate With Me — Candace Semien

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Lupus is not a butterfly experience for Candace J. Semien. It is a continuous wolf attack. She lives with lupus and Sjogren’s syndrome — which, she says, are not badges of survivor honor but a harsh reality. She infuses diversity into the growing lupus awareness and advocacy megaphone.

A journalist by nature, she pulls and prods for ways to live purposefully while having limited abilities and dis-abilities. Through this column, Candace asks hard questions about lupus and shares answers that will improve the lives of people living with chronic, autoimmune diseases while encouraging honest and bold patient-family-doctor relationships.

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Caught without my helpful spend-a-night bag

Lupus attacked me in an entirely different way this year. How did I respond? You guessed it: I rushed to get an urgent, same-day visit with a specialist, then sprinted to the emergency room when the pain kept shifting and didn’t respond to any treatment I had at home.

Candace Semien

How an afternoon tea led me to my rare disease communities

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 don’t understand lupus pain, but I understand Cori Broadus

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,…

3 places I will definitely go this year while living with lupus

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…

Why learning to say no is part of self-advocacy in healthcare

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…

Another take at living with lupus and hearing ‘you don’t look sick’

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…

When lupus prevents traveling, I have a ‘Bismott Moment’

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…

In a crisis, I follow the advice from my Lupus Training 101

“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.

Finding meaning in life with lupus through seeds and beams of light

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…


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