Scleroderma: Pondering Self-esteem and Gratitude

Scleroderma: Pondering Self-esteem and Gratitude

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.



  1. Connie Shroyer says:

    Hi Lisa! I so appreciate your sense of humor combined with the level of gratitude you exhibit. I’ve have Sjogren’s for 16 years and probably Scleroderma too, but was only diagnosed with it three years ago when the red spots started to appear on my face. Now they’ve taken over. I was whining to my husband recently about being tired of applying two layers of makeup every day (another male friend refers to thick makeup as “spackle”). So I feel your frustration!!
    My hubby replied, “Well, don’t wear any.” Easy for him to say!
    Last year my 3 year old granddaughter asked me how I got ‘bugs’ all over my face. That had to be pretty scary in her little mind to think that! She’s gotten used to me, as I knew she would.
    Facing the changes in my appearance is difficult in a world that defines women by their beauty. I’m not a young woman – I’m 58 now – and I realize that most people aren’t even looking at me anyway. Without the makeup – I think I would feel like a sideshow freak. So I’ll keep applying the makeup on as long as I can. Living in Texas, it melts off pretty quickly anyway, especially in summer.
    I have a sister in law who is dying of breast cancer. She is only a few years older than I am. That puts my health situation in perspective, at least for me. So I have “bugs” on my face – my lips are thin, my mouth is smaller, and my fingers are curling in on themselves. But in the overall scheme of things, I am good. Wonderful husband, two amazing sons, and two grandchildren. I’ve reached a point where I don’t have to work so I can travel when I’m needed by family in other states. Life is good, even with “bugs.”
    God bless you, Lisa. Take care,

  2. Rochelle says:

    Hi Lisa, just taking the time to let you know how much I appreciate and admire what you’ve written.

    I’m 28 years old and was diagnosed with scleroderma last year, after 8 years of refusing to go to the doctors for anything, I’ve never been a fan of doctors haha
    I first noticed my first signs of Reynaud’s symptoms (not realising what it was or how bad it actually is)when I was 19 years old. My specialist is not happy with how fast the scleroderma is progressing with my skin, Reynaud’s and the more consistent pain and ups and downs with my kidneys and bowels. Reading your description about your skin instantly touched me because for the first time ever… I’ve just come across someone who feels the same and suffers from lack of confidence and depressiveness because of their blotchy skin that looks diseased if not grey and sickly, and the hands that never work. Thank you for posting your writing. Its helping me cope 🙂


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