14 ways to rebuild when lupus symptoms bulldoze life

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 by Candace Semien)

The first story in “Maktub,” as presented in the two-hour Libro.fm audiobook, is about a traveler near Rio de Janeiro who inquires about a house made entirely of discarded fragments. The storyteller explains that in 1899, the owner was divinely instructed to build such a house. In obedience, the owner selected “broken tiles, ornaments, cracked pots. Every fragment transformed into something beautiful.” It took the owner more than 40 years to complete his home before he died, at age 93.

As I listened to Libro, my new way of reading, I found it easy to visualize the homebuilder taking chipped bricks, rough and smooth pebbles, multihued stones, shards of glass, melted plastic, hardened bark, and shiny chips of pots, then stacking and aligning them in whatever way possible to fashion a livable home — all after something has destroyed structures nearby.

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Picking up the pieces when we’ve been bulldozed

Even though systemic lupus erythematosus is the most common form of lupus, the diagnosis of this rare disease comes like a bulldozer at the structure of our lives. It decimates desires. It shatters what we’ve acquired in our lives up to that moment. It batters our bravado.

A diagnosis of lupus, Sjögren’s, Hashimoto’s, fibromyalgia, or fill-in-the-blank pulverizes what we believe of ourselves. The bulldozer can be unrelenting in one moment and solidly still in another. It’s a daily threat for those of us who are living with chronic conditions that are frequently and unpredictably debilitating.

How do we learn to pick up the pieces and make a change? How can we hold on to the best fragments of our lives before we had our sour disease and find a path to carry on?

Over time, I’ve found a few useful strategies to gather fragments and build and rebuild between hospitalizations. I know it’s a lifelong architectural project, as it was for the story’s homeowner, and it may take 40 years for me to completely build a kind of “home” out of systemic lupus.

As I build, though, I see hints of beauty as these fragments form a whole.

When lupus bulldozes me, here are 14 ways the pieces come together:

• Holding tightly to my love for reading by listening to Libro and Libby audiobooks at times when my vision is blurred and my brain fogged
• Giving myself “patient days,” when I don’t push through the day and am instead tender, understanding, and patient as lupus symptoms limit me
• Making prayer and spiritual baths a habit
• Overcompensating when I can, and writing and studying when my hands and cognition allow
• Floating in swimming pools when my mobility wanes
• Accepting someone else’s idea of a gift, be it lentil and okra stew, fresh green juices, cannabidiol (CBD) chocolates, grip sticks, car washes, or a stuffed giraffe
• Tempering cravings with bitter pineapple, lemonade, pickles, and peppermints
• Creating maneuvers and capabilities in areas where I’ve been disabled
• Accepting, in the moment, what I can do in the face of what I can’t
• Recording in a bullet journal the things that soothe my symptoms
• Working through text messages and scheduled emails to feign strength
• Capturing an insane number of photos, videos, voice memos, and screenshots to restore memories
• Loving and receiving love differently, through cracking hearts and with touches and hugs that sting like wasps
• Fully allowing the bounce-back moments to become the mortar between the fragments.

Surviving lupus and more requires all of these things from me. And I have friends within the lupus and rare disease communities who’ve had to find dozens more strategies to rebuild and restore themselves daily — even hourly — as they push through the pains of diseases and disabilities. I look at them with awe and admiration.

We’re building our lives with fragments, and they’re being held together by a marvelous mason: God.

Each day a miracle

In the seventh story of “Maktub,” Coelho writes, “Each day has its own miracle, accept those blessings and create your small works of art today. Tomorrow you will receive more blessings.”

While living with lupus and its wolf pack, sometimes all we can do is breathe and believe in a miracle for the day. But how amazing it is to know that a miracle will come. A blessing is ahead.

As the miracle takes shape, we can stand in silence and feel love wrap around us. We can find enthusiasm, enjoy some silly nonsense, and laugh out loud. We can pick up the broken, shiny pieces of our lives and pull through our daily battles. Whenever and as often as possible, we can face this journey with courage and use those broken pieces to build a new, color-filled mosaic of a life.

And we can always celebrate the miracle that has happened today.

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.