The Toxic Myths I Internalized as a Person With Facial Differences

I am 58 years old, married, have two teenage children and a Ph.D. in clinical psychology. Yet there is a simmering part of me that feels worthless – someone to be tolerated. Someone deserving of being thought of as “deformed.” While I know these terms are eschewed in contemporary nomenclature, this is the language I was raised with – along with other equally toxic terms that I have internalized and have contributed to my confusing jumble of assertive militancy and self-sabotaging acceptance of mean-spirited or clueless comments. When it all boils down, I remain vulnerable to defining myself as someone who has managed to be “successful” despite being born with a birth defect called Goldenhar syndrome. I constantly work to really believe I am successful because I was born with a facial difference. For me, part of this process is being seen – strengths and vulnerabilities. Whole.

I have colleagues who have taken up the mantle of advocacy – who are proud of who they are and working to increase awareness and acceptance in the broader community. I have mostly stayed silent. I have recently started asking myself – why? I will not bore you with the recount of decades worth of therapy. What I am coming to appreciate is that shame-based silence normalizes the idea that different is “less than.”

I suspect I am not the only one who has been the recipient of comments like “she is so smart, talented, kind, funny (fill in your favorite attribute of choice). What a shame she looks like that.” I think that there have been some sentinel experiences that have shaped how I related to myself and the world around me. The voice inside my head is berating me as I write this, telling me to be quiet – no one is interested. In an effort to tell the sneaky critical voice inside my head to shut the blank up, I’d like to share a bit of my story.

Myths are stories we tell ourselves to understand things that either do not make sense or serve as cautionary tales or to establish norms about what is acceptable and what is not. There are two central myths I was told about my birth. My father told me that when I was born, my mother and her two sisters sat shiva and wailed and grieved. Shiva, for those who might not be familiar with this term is the ritualized period of mourning following a death that observant Jews practice. My mother insisted that my premature birth was met with great joy and celebrations. As an adult, I recognize that probably there was a little truth in both “creation” myths.

What I do know is that I was aware I was different and “less than” since I was quite young. Virtually all my school pictures were taken in profile to hide my “bad” side. I remember waiting in line with all the other children to have school pictures taken. I jumped up on the stool when it was my turn and sat tall facing the camera. There was usually a pause and then the photographer would ask me to turn to the side so they could get a “good” picture. I never thought twice about it – it was just my norm. Having pictures taken is still hard for me.

I have lots of similar stories but sharing “war stories” is not the point of this. As I have been chewing on my lingering sadness and insecurity, the incongruity of my external professional, confident persona and my internal shame and sense of unworthiness have increasingly weighed on my heart. I find myself tearful when I read the powerful accounts shared by advocates for awareness and acceptance of facial differences. I share now because I have often felt alone and isolated in my feelings of shame and unworthiness.

I know I have learned to mask my vulnerabilities and have spent much of my life finding ways to be useful as a way of “making up” for my appearance. As if by proving I was smart and could make a meaningful contribution to society, somehow my “deformity” might be overlooked or forgiven. I could find the acceptance I so crave. I am wise enough to recognize that the only acceptance that will set my spirit free is the acceptance I give myself.

So I take the risk to share the impact my internalized myths have had on how I relate to myself and the world. I always worry that if I share my “truth” I will be pitied — something devastating to me as it feeds the part of me that feels I don’t deserve to be in this world. I find myself fighting the urge to point out all my accomplishments, as if to erase the vulnerable words and reassure myself and others that I am fine. Competent. Normal. And sometimes, I am. It is helpful for me to be “seen” as the urge associated with shame is hiding. I’m pretty good at hiding. I suspect that I am not the only one who struggles with trying to find peace and internal acceptance.