Self-love With Scleroderma Means Accepting the Imperfections

Lisa Weber avatar

by Lisa Weber |

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I lean closer to the mirror and steady my hand as I trace the waterline of my eyes. Then I step back to analyze my work, hoping the makeup has livened my tired face. I feel lost as I try to recognize the woman in the mirror’s reflection. I know it’s me, but only bits and pieces — fragments of the face I used to have.

Suddenly, a flashback consumes my mind. I’m a young child, curled up next to my father on a fancy white daybed adorned with scrollwork and golden posts. In my fit-for-a-princess bedroom, he reads me the classic children’s book “Stuart Little” by E. B. White, a  feel-good novel about a tiny mouse that used to enthrall me.

Those nights reading together with my father will always have a special place in my heart. But why does this particular memory pop into my mind at this moment?

Suddenly, the tears begin to free-fall, and my cheeks flush. I realize that I’m looking at the mouse version of myself. I used to wonder if I would look like my grandmother as I aged, but now I’m wondering what an elderly mouse would look like. How does my husband feel being married to this new mouse lady?

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Scleroderma has changed my face

My once full cheeks have been pulled back toward my ears, narrowing my cheeks like a rodent’s snout. My cute-as-a-button nose has eroded, leaving a thin, bony structure in its place. As my eyes stare back at me in the mirror, I wear a look of permanent shock on my perfectly round and wrinkle-free face.

I attempt to pucker my lips, but the thin lines don’t budge. In proportion to the rest of my body, my tiny face mocks me. All I need are whiskers and I’m ready to eat cheese and cuddle up inside a mouse hole.

It’s as if I’ve been held down and forced to have cosmetic surgery on every facial structure, and I wasn’t allowed to choose the outcome. This new outer shell is unfamiliar to me, and I react harshly to this stranger. I’ve developed a relationship with a second identity — the person that scleroderma created. I become so enraged with this new woman who stole my physical features.

Yet if I were looking at a stranger, I wouldn’t think she was ugly. In fact, I never wished to be perfect, either, nor did I want to look like someone in a magazine. Cosmetic surgery never crossed my mind, because I was OK with the person that my God had created, and I accepted who I was with open arms. So why can’t I fully embrace this stranger in the same way?

I will look at myself with love and grace

As I stand there watching myself unraveling, the mumbled cries sharply come to a halt. “I’m not a mouse!” my rational inner warrior proclaims.

I take another step back and try to see myself as a stranger. I see that I am human, and the mouse figure begins to fade. The crying stops, and I laugh and roll my eyes at the craziness that has just unfolded inside my head.

I don’t know exactly what caught me from going over the edge, but I’m grateful for the intervention. I finish touching up my makeup and begin the rest of my day as planned.

“Look at people with the eyes of your heart,” inspirational author Alexandra Vasiliu wrote. That includes ourselves.

Loving myself despite my imperfections

Scleroderma may be destructive, but it has taught me to look at myself from within. From the wreckage, I am learning how to build a stronger version of myself. I constantly retrain my thoughts to focus on what truly matters while accepting myself as perfectly imperfect.

We all deserve grace, but it doesn’t come easy. Think about all the times you’ve bitten your tongue to avoid hurting someone’s feelings. Try to practice that same self-control with yourself. Give yourself the same grace that you give others. When cruel thoughts surface, bring out your inner strength and fight like you are your own best friend.

Self-love is the best medicine, more powerful than scleroderma.

Practice being kind to yourself

Everyone has a personal battle to face. It may be an eating disorder or scars that are difficult to hide. No matter what demon you have on your shoulder, find a way to treat yourself the same way you treat your friends and loved ones.

The person inside will always be worth so much more than our exterior shell. So, slap a smile on it, lift your chin, and go make happy memories!

***

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

Susan & John Parlo avatar

Susan & John Parlo

You are forever beautiful to us!
We love you, always xxx

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Christel Goetsch avatar

Christel Goetsch

Thanks for the reminder that we are not “perfect” beings! I often find myself being my own worst critic. I’m just plugging along trying to do the best I can with a few more issues than the average bear!!

(I enjoy reading your practical posts!)

Christel

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Linda avatar

Linda

Thank you for this commentary. This disease is so different and most people do not understand....it is so true what you write for all of us. Your heart and face are beautiful.

Reply
Tobey Schwartz avatar

Tobey Schwartz

Thanks for sharing your thoughts and feelings!

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