Bravo! While living with lupus, you can ‘do it real big.’
Celebrate how you've survived and thrived without getting washed up in guilt
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? Oh, how easy it is to stay down or angry about it.
Systemic lupus erythematosus can cause a full-blown attack on my mobility, cognition, energy, circulation, and vitality in multiple ways. Unexpectedly. In varied intensity. It can be hard to find sanity with the constant barrage of symptoms, related maladies, and everyday anxieties. Sometimes finding something to be positive about or, dare I say, celebrate becomes nearly impossible.
But can we pause and take in the moment of the new year? This new hour, this new day is one that lupus threatened every day of last year.
Using the words of poet Lucille Clifton, I’ve invited you, each time you read this column, to do this:
“… come celebrate
with me that everyday
something has tried to kill me
and has failed.”
Let that soak in. Lupus has failed to kill you. You’re still here. Really, consider it.
I’m sure you can name people who passed in 2024 after years of living with lupus. I’ve read about the lives of Ryan Levert, Peter Kelley, Kathryn Brown, and Lorraine Graves, all of whom had lupus diagnoses at the time of their deaths.
When I look within my circle of friends who live with lupus, I can see the highs of life mixed in with the deep valleys of disease. Just throughout 2024, I saw lupus cause strokes, diabetes, crippled limbs, extended dialysis, fluid buildup around organs, body sores that required hyperbaric oxygen therapy, loss of teeth, lower cognition, and uncontrolled swelling.
What to do with survivor’s guilt
Lupus continues to be a beat-you-down condition. When we’re not in the worst of it and have escaped lupus-caused death, it’s easy to feel a degree of survivor’s guilt or remorse.
Survivor’s guilt is when a person has feelings of guilt because they survived a life-threatening situation when others did not. Mental health professionals said survivor’s guilt can feel overwhelming, like a unique combination of helplessness, guilt, and shame. It can affect the body, causing headaches and feelings of fatigue, insomnia, and nausea. All of these feelings only complicate things for our bodies and create opportunities for the increase of inflammation and the trigger of lupus activity.
We cannot and will not take survivor’s guilt into the new year.
As we think about 2025 and consider how we’ll approach any health changes and wellness goals, we must celebrate our survival and understand that celebrating doesn’t mean flaunting (although within the right circles and among people who’ve seen the extent of our fight, flaunting may be necessary).
We’ll celebrate that our lives are continuing despite daily disease attacks. We’ll celebrate entering another year where we can find purpose, discover remarkable friendships, love hard, and have amazing adventures. We’ll turn up the volume of our lives and share our survivor’s story. And every day, at bedtime, we’ll give ourselves a round of applause and say, “Bravo! You’ve been working hard.”
If strength, mobility, and pain — yes, all three — allow it, we’ll take instructions from lyricist and singer Ledisi and “put our best dress on … do it real big” and clap for ourselves.
Go on, clap for yourself. Clap for us.
We’re celebrating life!
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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