Isolated Suffering

To not know anyone who is suffering from the same source of pain is really lonely. I was isolated in the lack of exposure to my birth defect, making me feel as if I was some obscure mistake. There was no one I could look up to and see that everything was going to be okay. In the narrow lensed view of my teenage eyes I had no choice but to pretend that I wasn’t living with a physical abnormality.

I felt constantly at war with my self and betrayed by my body. Being filled with anger/ resentment left no capacity for compassion at the time. I was mostly concerned with “survival” which caused me to adapt in secrecy. I wasn’t very familiar with what Poland Syndrome was because there wasn’t much information on it that was easily accessible. I didn’t apply much effort into learning more because I became so adapt at hiding, even from my self. I simply avoided bringing attention to it by disguising it.

This consistent application of disguise is depleting. A large portion of my internal awareness was directed toward my physical appearance. Making sure I seemed normal, hiding scars so people wouldn’t ask, or making jokes when they did to change the subject. I do not recommend designing a reality where you consistently have to strategize an alternative appearance. It is mentally, physically, and emotionally exhausting; and that constant internal friction creates a need for some serious coping mechanisms.

Over the years I began to feel more acceptance about my conditions and began opening up to those who would ask. There was a noticeable difference in being honest in my response than

Sharing publicly has allowed me to liberate any shame that I still carried with me about my condition. It has allowed me the very thing I wanted most, to connect with other women who know what it’s like to live with Poland Syndrome. Every time I interact with someone who shares their experience with me I can practically feel old wounds healing.