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The Biggest Struggle I Have Because of Poland Syndrome

Like some women, I silently struggle with body image. It’s not just my weight or my face that causes this, though. I have a secret I’ve spent most of my life hiding since the cruelty of puberty and the bullying words of middle school. Even now I carefully choose my clothing, my bras, making sure it isn’t visible. I bowl left handed, but don’t tell people why. I spend all day on my feet doing a job I love, but I painfully pay for it frequently at night where only my husband sees and hears the aftermath of pain.

I have Poland syndrome.

Poland syndrome, named after British surgeon Alfred Poland, is a rare condition characterized by underdeveloped or absent chest muscles on one side of the body. It can also include other abnormalities or underdeveloped muscular or bone structure issues on the affected side of the body, including an underdeveloped or structurally altered rib cage, breast development issues, shortened or webbed fingers, and impacts to the shoulder, arm and leg. Although it is believed to be a sporadically occurring condition with no known cause, there is evidence to support it is caused by a vascular abnormality during early pregnancy, and there are also speculations that Poland syndrome can be genetic. Because there are so many unknowns, I ended up having lots of extra fetal testing during my pregnancies just as a precaution.

For me, Poland syndrome has impacted my entire right side of my body in some way. My rib cage and chest on the right side of my body is more concave, and my right breast is significantly underdeveloped (compare a grapefruit to a golf ball). My shoulders are different heights, my arms are different lengths, as are my legs. I lack strength in my right arm, but do still have fine motor development, meaning I do write with my right hand, but choose my left arm to do any lifting or anything that requires strength, like bowling. Though the length difference in my legs isn’t noticeable just by seeing me stand, it is significant enough that in 30 years of life it has taken a toll on the left side of my body (which takes all the weight and force of walking) by causing pain and alignment issues with my knee, hip and lower back. For example, a chiropractor performed X-rays on me a year ago and said he usually doesn’t see the type of damage and problems that have developed in me with someone until their 50s or older. I’m currently 30.

In many ways, I consider myself fortunate. I see myself as able-bodied and I do not have any significant health conditions because of Poland syndrome. Therefore, I have often found myself struggling with serious shame when I complain about my pain or become so frustrated shopping for swim suits that I storm out of the store empty handed. I will spend hours after thinking horrible thoughts and feeling extreme guilt. You don’t deserve to complain about your body. There’s nothing wrong with you. You are a fraud and a wimp.

What I really want, though, is to get to a place where I am actually OK with who I am, that I actually love myself and my body. I’ve accepted I have Poland syndrome, but I haven’t yet accepted that it doesn’t make me any less beautiful. I hope that with time, with sharing my story, and with learning to see the version of myself that other people see instead of my own distortion, I will be able to love myself, Poland syndrome and all.

Getty image by SvetaZi