This Little Light of Mine

This Little Light of Mine

Scleroderma and the Ordinary Girl

At times, I can become really despondent when I see the changes that scleroderma has caused to my physical appearance. One of those times happened last weekend when I was trying to decide what to wear to a friend’s wedding.

As usual, the normal kerfuffle occurred with the wardrobe as I went through all my clothes. Occasionally, delighted exclamations were heard as I found something from my pre-scleroderma days that I’d forgotten I had. However, delight quickly turned to disappointment once I tried it on, only to discover how much my body and general appearance have changed.

My mood was getting worse and worse with each outfit I tried on. Gone are the days of cute dresses and gorgeous skirts as my legs just aren’t right for them anymore. The skin-thickening and pigmentation changes that are now obvious mean my legs are not a pretty sight. A more sedentary lifestyle brought by profound fatigue and joint pain has meant extra weight gain in obvious places.

At one point in the process, I actually got stuck in a little spandex number I used to wear. While I managed to squeeze into it (with the resulting look being similar to an overstuffed sausage), I found I couldn’t get back out of it again. For a second, I thought I may have to yell out for Max to come and cut me out with my dressmaking scissors. Luckily, a last-minute concentrated effort meant I managed to pull my arm through and free myself.

I have to admit, it actually was pretty funny to see myself in the mirror, with my hair awry, glasses hanging from one ear, trapped by my own clothes. The moment I saw myself giggling in the mirror, I noticed something else.

My eyes were twinkling and my anxiety was on hold while I enjoyed a laugh at my unfortunate appearance. A glow emanated from within that shone through my face, detracting from everything else.

I have learned much about coping with changing appearances related to scleroderma. I feel I have grudgingly accepted what the disease has dealt me in this respect. However, this weekend I learned the importance of discarding my worries about how I look. The amazing thing is that when I allow these shallow preoccupations to fade away, my inner light is able to shine through.

This glow from within sparkles. It is a culmination of the best parts of who I am: my humor, love, sense of fun, and openness to connect with others. As long as I take responsibility not to allow scleroderma to cast a shadow, the disease can’t touch my light.

Scleroderma has taught me much about what being attractive means, but particularly about the value of inner beauty. 

I’m now highly anticipating the big day. The gift is wrapped and I’m looking forward to seeing the gorgeous couple exchange their vows. I’m also looking forward to letting my inner glow shine — after all, it’s the best part of my entire outfit!


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.

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