Last week, I began my column with an unusually large dose of self-deprecation.
‘If my body were featured in a circus sideshow freak 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, 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!’
I originally wrote the excerpt above as part of an article pitch I sent to a popular online magazine two years ago. I used it in last week’s column because I still felt it conveyed how others see me. Two years after originally writing it, I feel a blend of humiliation, amusement, and confusion.
I’m mortified because I realize how harsh I come off. I would never in a million years speak about any other human being with such cruelty. Why would I demean myself that way? Plus, I don’t (usually) regard myself that poorly. I’ve spent years trying to combat society’s obsession with outer beauty. Yet, the content of this pitch was essentially condoning it.
Despite being embarrassed by my words, I can’t help but remain mildly amused by my warped humor. I’ve always used humor as armor. From a young age, I tried making fun of myself before others had the chance. Making light of traumatic situations has gotten me through the darkest times of my life. Scleroderma is hard enough (pun intended), so why make it tougher by taking myself too seriously? After all, don’t they say laughter is the best medicine?
Being both mortified and amused by my self-deprecating remarks is puzzling. Aren’t these feelings contradictory? How can I justify viewing myself in such poor regard as funny? If I want others to give credence to my message on redefining beauty, why on earth would I call more attention to my exterior disfigurement?
I’m not sure I have a good answer to these questions that confound me. I do know that navigating life with scleroderma isn’t easy. Sometimes we just need to do what works for us and not try to rationalize the crap out of it. Since scleroderma is such an irrational disease, why shouldn’t our ability to face it be anything but illogical?
To learn more about my journey with scleroderma, visit www.comfortableinmythickskin.com
Click here for details about my memoir, Does This Hospital Gown Come with Sequins?
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.