Speaking from my Skin

For more than half of my life I have existed with the skin depigmentation condition of vitiligo which affects between .5-1% of the world’s population (Khuld, 2019).   When the first albino white spots began to appear on my arms and hands when I was 26, I went into a panic, not wanting to appear ‘other than’, pushing up against what my European heritage and culture had deemed ‘normal’:  having unbroken and even skin tone.  The first dermatologist I saw, a white, male, middle-aged doctor, told me I’d be ‘fine’ because I was ‘fair’.  But I wasn’t reassured by his words, so rooted and biased in his own experience.  His world of medicine treated vitiligo as a disease without a cure.  The only treatment at that time was large amounts of topical steroid cream to slow the progress.  The internet in 1996 was still dial-up, so finding out about this disease was a challenge.  As the computer screen slowly downloaded photos, what I saw online alarmed me.  There were images of large swatches of pigment taken away by the genetic instructions within the body.  I felt I was being taken over by some process beyond my control.  It was scary, I felt alone and ashamed. This was an era before the social media world of body-positive movements or models like #VitiligoPride, #DopplerBodies, and #SpottedBeauty (Khuld, 2019).

So, slowing down the evolution of this change taking place in my body became my focus. I did not pursue the steroid since there were too many side effects long-term.  Instead, I explored many of the alternative health practices and bodywork that ended up becoming my lifestyle and eventual career-Ayurveda, Traditional Chinese Medicine, Reiki, integrated therapy, etc.   As there is no melanin in my vitiligo skin, moving to Seattle soon after receiving the diagnosis was another health-enhancing choice because of the limited, direct sun in the Northwest for many months of the year.  As I made these treatment and lifestyle changes, my attitude toward vitiligo changed as well.  One massage therapist I went to told me that the spotted appearance on my back reminded her of the coat of a palomino horse.  That comment, along with the shift in my own mind, began to help me normalize and embody what was occurring.  Eventually, as fate would have it, I met my partner Richard, who, unbeknownst to me at first, also had vitiligo.  He was the only other person I had met with this skin and together we’ve been able to deepen the level of self-acceptance we both had already started to work on.  I also feel a certain freedom now, wearing my doppled skin the way others with tattoos wear theirs. My skin tells a story, and if you want to know it, I’ll tell you.

References

Khuld, H. (2019). Vitiligo: Challenging Cultural Assumptions and Shaping Identity. Journal for Undergraduate Ethnography, 9(2), 33-49.

Text copyright Eileen D. Wurst 2023