How scleroderma transformed me from a caterpillar into a butterfly

The disease has brought on many physical and mental changes for  columnist Lisa Weber of Scleroderma News

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.

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.
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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!