Scleroderma’s Telangiectasia Taking Over My Face

I had been thinking the camera on my phone is faulty.  It seems to have been mistakenly set to “red spotty chipmunk face” mode for the past year or so, and I just couldn’t seem to change the setting.  Every selfie I took produced the same result!  My theory that there was someone conspiring against me was confirmed when I caught sight of myself in a friend’s bathroom mirror a couple of months ago.  There it was again … red spotty chipmunk face.

With a growing sense of horror, I have realized this was not a conspiracy, nor a faulty setting on my phone.

Basically, scleroderma is taking over my face.

My skin is getting slowly tighter and beginning to change the shape of my nose. The telangiectasia (read more here) are increasing by the minute, it seems.  Despite my “great prednisone wean off,” my face remains chipmunk-like.

I’ve always been what you would call the “casual” type – I think a trendier term these days is “shabby chic” or “boho.”

Quite frankly, I’m probably just an almost 50-year-old jaded hippie.  No high heels or latest fashion for me, and certainly no makeup, or very little – only if I was going to some kind of posh affair … my own wedding, for example.

I’ve never been someone to conform, especially when it involves beauty and body image.  I’m here to be me, not to present myself according to what is deemed attractive.  But getting the telangiectasia has challenged my self-image.  I’m tired of people’s comments …”you seem to have some food on your lip.”  No, actually … that red mark is  one of the delightful things that happens to your face when you have scleroderma, but thanks for your concern.

I have started to wear a mineral foundation everyday now to cover the telangiectasia.  While I can’t do anything about the chipmunk effect, I can try to style my hair to suit the chubby cheeks.

To be viewed as ‘normal’

Suddenly I want to conform … to be viewed as “normal.”  However, conforming in this way feels uncomfortable for me.  It has challenged some of my core beliefs.

I grudgingly decided to do these things, wondering if I could still be “me.”  I consider myself a  harem pants and tie-dyed, T-shirt-wearing girl from the ’70s and I love this about myself.  Makeup and a flash hairdo seem to be for the “beautiful people,” the high-powered businesswomen, the fashion setters.

Yesterday I put on makeup in the morning, covering the telangiectasia. Then I went to see my wonderful hairdresser Janine. I sat in her salon and watched the transformation with interest. From the beginning of the whole process, where I looked like some kind of extra-terrestrial, or possibly a slightly deranged Teletubby, at left.

Through to the end result, at right.

And surprisingly, I felt so much better, more confident, more normal.

Normal — what is that anyway?  How does that word fit in when I have a disease that is far from normal?  One that changes my actual face!  I question why I have to hide my telangiectasia.  Why now do I feel compelled to “conform” with what is considered “acceptable”?

I still don’t understand this.  Janine and I discussed it while she was doing my “do.” Self-confidence is priceless for both women and men. In our culture, confidence seems connected to our appearance.  I feel uncomfortable about that, and yet feel much happier about looking “normal.”

Belonging is a fundamental need in humans, I used to come across it all the time when I was working as a therapist. People will go to any length to feel that they belong.  Being on the “outer” feels very scary.  Some of us are introverts and can handle this more readily than those who are more extroverted, but, nevertheless, at some level we all want to feel as if we belong.

Scleroderma is a rare disease.  It makes my life unpredictable and very different, every day.  This gets to be overwhelming.  Perhaps conforming in terms of my appearance is one way I can feel like the majority, less overwhelmed, less rare, and more ordinary. Even just sometimes.

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.