Dating with Poland Syndrome

Today, April 30th, is Poland Syndrome Awareness Day! I have been contemplating whether or not I would share anything for reasons I will share shortly. However, today at work I was struck with a creativity that I haven't felt in awhile, and I am glad to share.

For the past couple years I have celebrated Poland Syndrome Awareness Day by sharing what I call My Story. My Story has helped me in so many ways, but I now feel very attatched to that story; it has become comfortable. I describe this worry in another blog post titled "Am I Still Vulnerable?" We all have stories that we tell ourselves to reason with the difficulties in our lives, but it is important to stay receptive to truths that may not make sense within the worlds we've synthesized. If we rely on ourselves as the sole narrator of events, our constructed world will eventually crumble. With that being said, this is My Story:

I was born with no pectoral muscle and breast tissue on the left side of my chest. This birth defect, called Poland Syndrome, is rare and not genetic so I felt very isolated in my experience. Besides physically disabling me, my birth defect led to uniquely disturbing body image issues that impacted me from puberty through my teenage years. I have"overcome" my physical difficulties and learned love my body the way it is, and this process has been one of the most rewarding aspects of my life.

This is the story I wrote in an essay that won scholarships and got me into my dream school. It has served me well and given me purpose. Everything written above is true, but it isn't the whole story. I would be doing myself a disservice to not continuously inquire in to how my birth defect continues to impact me. There are some things that I can't overcome through willpower, and I will face new difficulties as I age in this body. I cling to this story that labels me as the protagonist and leaves no loose ends, but the truth is that I've consciously or unconsciously filled the gaps in my knowledge with details that align with My Story. So today, for Poland Syndrome Awareness Day, I would like to share a new story.

I remember being fifteen, sitting on the beach with my then-boyfriend, physically unable to speak the words that I had never spoken before. It didn't matter that he adored me, that I had so many features he admired. What mattered was that my breasts, that part of my body that defined me as a woman, were deformed in a way that he had never even considered, and there was nothing I could do about it. Eventually I forced out an explanation, and he was very understanding. But that didn't quench the worry that I would never be good enough for him, or anyone for that matter. I even felt bad for him for dating me; I truly believed that my birth defect significantly decreased my value as a person, and I hadn't told him about it until he was already committed to me. It felt manipulative, but of course the reason I hadn't told him was because I had such a hard time talking about something I was so ashamed of.

My mother told me multiple times that she was worried about how my birth defect would impact my sexuality. In my head, I heard I'm worried that boys won't like you because of your chest. You will never find love and there is nothing you can do about it. While she meant well, I think her telling me that did more damage to my self esteem than the birth defect itself. It didn't help hearing girls in the locker room critique their slightly lopsided breasts and complain about how ugly they were. Of course, we were suffering from the same system that places disproportional value on a body part designed to nourish babies, but my preteen brain only felt shame. I can understand why my mother was worried: I see women with completely normal breasts that happen to be small get shamed on the internet all the time, the reaction to a chest like mine would be much harsher.

Over the years, I gained confidence by pushing myself to be more vulnerable by opening up to people about my birth defect. In 2021 I finally got the courage to share about Poland Syndrome on social media, which was a really big deal for me. As I write this I am acutely aware of the fact that once I share this story, I can't take it back. I was just as aware of this back then. Furthermore, I was worried about how potential romantic interests would react to this information about me-would it steer them away? This is an irrational worry that I am not proud of; of course I want a partner who accepts me for who I am! And to put it bluntly, I have made a beautiful life out of my circumstances and if someone is too superficial to see that, I want nothing to do with them. In the years following my "coming out" with Poland Syndrome online, not only have I found a community of others with this birth defect, but I've noticed that more people have expressed interest in me in intimate ways. It is hard to say whether this is a correlation or causation, but since opening up I have become a much happier and more confident person. And I would like to think that people are drawn to the work ethic and compassion I've acquired through my journey in this body. It has been liberating to realize that my energy around others has heightened since putting my true self out there into the world. I guess my birth defect influenced my sexuality in more nuanced ways than my mother originally thought.

I don't think I will ever fully wrap my head around how Poland Syndrome impacts my sexuality because I can't see inside the minds of people I've been intimate with. I genuinely wonder how I would feel if I found out someone I was interested in was missing a breast, without the perspective of living that experience. How would I react? What would I think but not say out loud? I always try to pair my sensitivities with an understanding for my partners reaction while simultaneously protecting myself. Sometimes I ask myself how a partner would react and treat me in an ideal situation, and I don't have a solid answer. I have unfortunately experience situations which I hope never happen again, where I was treated like a freak or my birth defect was ignored like they wished it wasn't there. But I've also had valuable experiences that made me feel more at home in my body in ways I couldn't do without someone there guiding me. I want someone to approach me with a profound respect for my body and soul, which is a universal desire. And I acknowledge that this takes time and effort on my part.

Currently I don't have a love life outside of that with myself. I continue to be my own soulmate by asking myself tough questions and sometimes sharing the answers. I think it's important to share these stories because I believe my unique experience contains wisdom that is valuable to everyone, and it helps me continue to thrive in a body that is disabled and disfigured. We all have insecurities, and I hope that this story inspires you: If I can find a way to love my body when society tells me not to, so can you.