Being Disfigured by Scleroderma Gave Me the Chance to Love Myself

I will never look the way I wish I did, but I can't allow it to consume me.

Most Popular

Nobody escapes adolescence unscarred by the agony of bullies, peer pressure, acne, and hormones. Along with every survivor of that awkward era, I, too, faced these obstacles. But I had the added bonus of navigating a newly diagnosed autoimmune disease: scleroderma.

I was 10 years old when doctors introduced me to the unknown world of scleroderma. It was 1985, long before Google could tell you every horrifying detail about your illness. I had no idea scleroderma could affect a patient externally, causing the skin to tighten and result in disfigurement and other painful physical abnormalities. Nor did I know that in its worst form, scleroderma attacks one's internal organs and can be fatal. In an effort to shield me from the complexities of scleroderma, my mom told me that my skin was tighter than normal, but that I was perfectly fine otherwise.

Advertisement - Continue Reading Below

Between ages 10 and 12, my body underwent an unwelcome metamorphosis. While my friends were getting their first bras, periods, and boyfriends, I was developing painful calcium deposits on my joints, red spots (called telangiectasia) all over my body, and losing elasticity in my limbs. My arms and fingers became contracted, my lips almost disappeared, and my legs resembled toothpicks. I couldn't sit crosslegged on the floor, open bottles of water, or hold anything that required a firm grip. Just placing my books in my locker caused pain and difficulty. During a time when everyone just wants to fit in, I stuck out in all the wrong ways.

More From Personal Stories
20 articles
sofia sanchez viral down syndrome video
Girl Challenges Stigma Surrounding Down Syndrome
brittany maynard deborah ziegler excerpt
This Is How My Daughter Asked Me to Help Her Die
What It's Like to Have Double Depression
amputee kitten helps veteran recover from PTSD
Amputee Cat Helps War Veteran Struggling With PTSD
i regret having kids
The Maternal Regret Movement

Growing up, I was the recipient of a lot of stares and audible whispers. Comments like "Look how skinny she is," "What's wrong with her?" "Does she have Chicken Pox?" followed me wherever I went. I wasn't armed with any responses, so I just pretended I couldn't hear them. After a year or two, I got used to people's reactions to me. I anticipated the comments, stares, and thinly veiled recoiling from strangers who were meeting me for the first time. Though I never verbalized it, I struggled with low self-esteem that devalued my self-worth.

My friends were my one saving grace because they offered me unconditional acceptance. There has never been a point in my life where I was not surrounded by a core group of incredible female friends. Multiple moves forced me to start new schools without knowing a soul in fourth grade and then again my freshman year of high school. Despite my altered appearance, I made friends easily and was rarely asked about my physical deformities. It wasn't until adulthood that I learned so many of my childhood friends were always curious about what was wrong with me, but didn't want to ask, for fear I would get upset.

But even with all the acceptance I received from friendships, the cruel whispers were ever-present as I walked down the halls at school. One group of guys harassed me in high school for three long years. They tormented me in mocking tones and hurled insults about how skinny I was. I spent a large portion of adolescence with a self-deprecating internal monologue looping through my mind. Any time I spoke to a guy, I would tell myself, There's no way he will ever like you! Who would like a skinny, deformed, red-spotted girl? I was convinced I was too strange looking for anyone to love.

Turns out I was wrong. I met and fell in love with my future husband in college. He will be so annoyed when he reads this because he thinks I exaggerate my disfigurement and insists I look very "normal." My close friends, family, and colleagues tell me the same thing. Many say they only saw my scleroderma the first time we met, and now they just see their friend, Lisa. To me, that's the best definition of love there is.

Love and acceptance from others is priceless, but nothing can replace self-love. I'm no longer that awkward adolescent who thought she was unlovable.

The knowledge that I enjoy relative health in comparison to many scleroderma patients has offered me a unique perspective on what really matters in life. I will never look the way I wish I did, but I can't allow it to consume me. This realization, and the desire to share it, has propelled me on a path of self-discovery. This path will twist and turn with many detours, yet I'm determined to remain on it for life.

Self-acceptance is a universal challenge and most don't think it's possible to rid ourselves of self-doubt. I can't say I disagree. Still, just because something might be impossible doesn't mean we shouldn't try.

Read Next: