Scleroderma: Pondering Self-esteem and Gratitude

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by Lisa Goodman-Helfand |

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If my body were featured in a circus sideshow attraction (that’s every woman’s fantasy, right?), the announcer might exclaim, “Ladies and gentlemen, children of all ages, come see the spotted lady with the world’s skinniest limbs and largest belly!”

I am covered with red and purple splotches (telangiectasia). My legs and arms are permanently contracted. I have an ostomy bag, seven thunderbolt scars across my mid-section and my fingers are a mangled mess. When I see articles about getting “bikini ready” for summer, I want to gag myself with a snow shovel!

Clearly, living with scleroderma since age 10 has taken a toll on my self-esteem. It’s been tough to bolster my sense of self-worth and attractiveness when I look markedly different from the norm. I want to feel confident with my appearance. Surrendering to self-deprecation and wearing a paper bag over my head is not how I want to live my life. I suppose the first paragraph of this article is counter-productive to that objective. (For the record, I’ve never really put a paper bag over my head, but can’t say the same about self-deprecation.)

Scleroderma compels me to wonder: How much should we alter our appearance to conform to society’s perceptions of attractiveness, and how many of our “flaws” should we reveal to the world? I’m not one of those crunchy people who think all women should ban cosmetics and let their natural beauty shine through. But I also don’t enjoy devoting time, money and effort to tediously applying cosmetics each morning.

I detest facing my reflection and wondering if I should I put on that extra layer of concealer and risk looking like I’m wearing a mask that could be chipped off with a chisel. Or, should I quit while I’m ahead and face a day where I look as if I’ve contracted the dreaded measles virus?

Like many aspects of living with scleroderma, my appearance is something I wish I could change. Sometimes I get depressed about my tiny tight lips, splotchy skin, and deformed limbs, to say nothing about the chronic pain I endure. Then I stop myself and think about how incredibly fortunate I am to have lived with scleroderma for 32 years. I remind myself to be grateful for my two beautiful children, supportive husband, a career I love, and friends and family who surround me with love and acceptance. When I look at scleroderma through the lens of gratitude, I know how trivial my plight is compared to others.

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 Services, and are intended to spark discussion about issues pertaining to scleroderma.