How a columnist holds on to hope amid the challenges of her illness
by Candace J. Semien | October 4, 2023
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 plastic chairs at a support group meeting. Fifteen women and three men introduced themselves. We sat around six rectangular tables, facing one another and squared off. Much like the Alcoholics Anonymous meetings we see on sitcoms, dramas, and film, everyone shared condensed versions of their “how I got here with lupus” story.
I realized we all faced a similar cycle in trying to process what it meant to live with systemic or discoid lupus. There seemed to be a pattern: Once the condition was verified, life stalled, then shifted, then remained the same until we were doused with resolve to live.
I saw the same intellectual and emotional processing while reading articles by fellow patient advocates, including Racquel H. Dozier, Kristi Page, and Shanelle Gabriel.
A patient’s search for meaning
Lupus attacks us in innumerable ways with unpredictable vengeance. Yet somewhere within its deadly wolf fangs, we find reasons to live and the hope necessary to endure. Yes, the highs and lows are immense and vicious. But within them, we try to find one more seed of light to sow and one more beam to reach for.
Finding a seed of light could look like standing barefoot in freshly cut grass, listening in on a prayer line, enjoying sweet tea and Zoom story times with your niece, or watching your mother laugh while driving you to infusions.
Reaching for a beam of light could look like showing up to Sunday dinner with your family, surprising your child with new dance moves, moving your firstborn to college, or trying homeopathic treatments to soothe your fears.
Either way, when we reach beyond whatever chronic symptoms we’re experiencing at the moment, we win in that moment. Then we gain enough confidence to believe that perhaps we can win again in the next.
Austrian psychiatrist Viktor Frankl said, “In some ways suffering ceases to be suffering at the moment it finds a meaning.” I’d be lying if I claimed to have found some grand meaning or ubiquitous purpose in my struggle with lupus.
There must be reasons I developed the disease, however. Doctors and scientists are researching to determine potential causes, be they environmental, metaphysical, or biological. Many of us, though, hope for a cure more than we hope to find meaning or purpose in our disease.
Each time lupus attacks, we may ask ourselves, “Will this suffering prove to have purpose, or is it just my brutal fate?” In these moments, I find it helpful to meditate, listen to my body’s needs, and let comfort light my way.
But regardless of the extent to which comfort comes, I make sure to celebrate that lupus hasn’t killed me.
Will you celebrate with me?
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