How scleroderma transformed me from a caterpillar into a butterfly

The disease has brought on many physical and mental changes for this columnist

Lisa Weber avatar

by Lisa Weber |

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I often see a butterfly symbol associated with various autoimmune diseases, including scleroderma. While some conditions, such as lupus, can cause a butterfly-shaped malar rash, my research hasn’t yielded any other explanations for this connection.

However, I do have my own theory.

Tucked safely away from the world, the butterfly’s life starts inside an egg as a caterpillar, unaware of the impending dangers or worries to come. This phase is like my life pre-scleroderma — a time when I believed all illnesses had cures.

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Learning to Embrace Life Changes With Scleroderma

Becoming a caterpillar

My diagnosis awoke me from my naive and simple understanding of the world. Before scleroderma, I thought I could overcome anything if I fought hard enough. If I saw the right doctors, ate the right foods, and lived a healthy lifestyle, I could win any battle and be healed.

For the first few years after my scleroderma diagnosis, I waged war, aiming to become stronger than my disease. But the more I fought, the more I became a version of myself that I hated.

Because I was so focused on scleroderma, I put the spotlight on everything health-related. This included all the physical changes, which made me feel ugly and less than my potential.

My fingers tightened into awkward, bony sticks. I developed tiny, red blemishes all over my face called telangiectasias, and I saw disfiguring changes happen to my mouth. I felt like I’d morphed into something grotesque and unwanted. I now think of this as my caterpillar stage.

During this phase of my life, I was angry and devastated. I felt as though my life would never be as beautiful as it was before I was exposed to the world of rare diseases. I battled myself as much as I battled scleroderma.

I was so appalled by my physical changes, disabilities, and inability to find the magic cure I so desperately wished for. And it was destroying me.

Inside my scleroderma cocoon

Physically and mentally broken, I started living inside a cocoon, where I was fully consumed by my disease. Scleroderma controlled every facet of my world and influenced all of my decisions. It was the lowest point of my life. I’d lost hold of who I was.

Instead, I worried about everything. How will my skin react if I get too much sun at my daughter’s soccer game? What if my stomach doesn’t tolerate that delicious dessert? Gee, my baby looks beautiful in her homecoming dress, but will I get to see her in her wedding dress someday?

I’d let my illness steal my life — even as I was still living it.

Emerging as a butterfly

But after eight years of living with scleroderma, something beautiful happened. I emerged from my cocoon and became the best version of myself — the butterfly I was always meant to be.

While I’m not cured and will never accept scleroderma as a blessing, I found a sense of peace and strength I’d never experienced before. After years of hard work, I became strong mentally.

Now in control of my thoughts and focused on the present moments, I finally feel like I’m living my life, and not the one scleroderma dictates. My illness rarely pops into my mind, and I no longer constantly think of myself as a sick person. I’m finally free!

Have my ailments disappeared? Absolutely not. In fact, I recently received devastating news that my lung function has worsened dramatically. If I’d heard this news two years ago, I would’ve researched options for days, cried for weeks, and worried for months.

But this time, I spent a few days refocusing. I cried a little and even got mad, but I didn’t change my plans. As a butterfly, I actively choose to gracefully carry on with my life, fluttering away without worrying about what’s to come.

The butterfly is a powerful symbol of growth and transformation. For me, it represents overcoming scleroderma with a strong mindset. Since I can’t control the physical changes, I work on improving my perspective. I’m loving the view from up here, and I’d welcome more company!


Note: Scleroderma News 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Mary Hammothe avatar

Mary Hammothe

The disease is overwhelming, but I refuse to be defeated. You gave me hope to keep pressing on in the fight. I will continue to fight and to do the all the things I enjoy, my self-interest, just enjoy life and put God in everything.

Reply
Chadrick avatar

Chadrick

Good afternoon,
I hope all is well, I enjoy reading your post all the time and find comfort in your journey and attitude towards living with what we are living with. With your Lung function being what it is now, do you have options to improve your lung function?

Reply
Tim avatar

Tim

I receive some health news that brought me down this week. As I battle the issues I face with my health, aging and limitations placed on me because of both, I tend to get very excited when I excel at something (even in the smallest) that brings back a taste of my youth. And then I start believing that maybe I can recapture that youth if I simply try hard enough. Yet, early this week, I found I could not. And I became despondent.

Last night, my wife and I had Chinese take out. As I opened the little fortune from the cookie, I silently entreated, "God, please let this be a positive one." Funny how we often look for nuggets where ever we can. I unfolded it and it said, "Expect the best." It made my heart smile.

As I read what you've written here, I am somehow uplifted. "The best" may not be what I've always envisioned of myself. But maybe, just maybe "my best self" will emerge from the circumstances that I never envisioned. Hope endures.

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Debbie avatar

Debbie

I love the analogy! Thank you for your posts. Best Wishes for your continued health journey.

P.S. My maiden name is Weber :) I was diagnosed summer 2022.

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