Friday, November 11, 2011

My Daily Battle With Poland Syndrome

Many people have commented on my previous post (I Have Poland Syndrome) that they admire my courage and bravery in sharing my birth defect with the world. They appreciate that I look on the bright side and love life, being confident that God made me this way for a reason.

Well, I want to let you in on a little secret... I'm not courageous. I'm not brave.

I'm self-conscious.

Now, some of you might think that I am courageous relative to others that have Poland Syndrome. Others with this birth defect are afraid to even tell their closest friends that they have a misshapen body and a figure that would get stares from people at the pool or beach. That may be true, but it is hiding the whole truth.

The reality is that all of my family and friends often forget that I even have Poland Syndrome. They thought it was interesting at first, and now they don't even notice it. It is not who I am, it's just what's under my shirt.

The real battle is with my own self-image. I still see my one-sided chest every morning. Every day I see my puny right bicep and thin arm. When I have my shirt off at the pool, I often intentionally put my towel over my right shoulder in order to hide my missing right pec muscle. When I pose in photos, I often intentionally stand on the left side of people to show off my left bicep rather than exposing my right. These are things I think about.

The first photo above was taken four years ago when we moved to Portland. I have this photo in a frame by my desk at work and every time I look at it, it reminds me how I purposefully stood that way to hide my right arm. I like the way I look in it because it shows off my left bicep and pec muscle.

The second photo was taken about a month ago. In this photo, I immediately look at my right arm and see how small it looks. Many would say "Aaron, it doesn't look small. It's not a big deal," but it looks small to me. I struggle with focusing on all of the joys in the photo. I'm not ignoring my beautiful wife and cute son on a beautiful day at the pumpkin patch, it's just that my eyes keep panning down to my arm.

This is the battle of self-image that I struggle with. It's not eating me up inside or anything. I live a pretty normal life. Most of my time is spent thinking about work and my loving family that I come home to every day. But those other times of the day when I am daydreaming or looking at photos, I see a man who is not as physically attractive as I would like to be.

The life-long battle of being self-conscious is one that will never end. I am constantly fighting these self-image issues and accepting the fact that I am different. Some days I love being different, while other days I wish I had a normal chest and two normal arms. It's a battle that I don't think I'll ever win... but I don't ever plan on losing the battle either.

God tells us in the Bible that although I want to do good and think good thoughts, evil is right there with me. The battle of my flesh is raging with what I know God wants: He wants me to focus on the love that Jesus covers us with...no matter what we look like. My body will eventually waste away and die, and it is what's in my heart and soul that counts. Thanks be to God, who delivers me through Jesus Christ!


Related posts:
I Have Poland Syndrome
My Tattoo
Will My Child Have Poland Syndrome?

20 comments:

  1. Hi Mr.Aaron, I am Ryan 20years old in Indonesia,,
    i read ur story titled Poland Syndrome and also this one.
    I really proud of you, u put God on everythings happened in ur life. Some people probably blaming God if they were in ur position , but u, u just realize me to always be grateful for everything happen in our life , because Jesus have a purpose on it :)
    God Bless u Mr.Aaron and ur family ,, keep inspiring others :)

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  2. Wow, I am 42 years old and never knew I had Poland Symdrome until I stumbled across your blog. I'm lucky, I guess, as the syndrome does not affect my arms, but I can totally relate to draping a towel over my right side at the pool. Thanks for the information. I am a Christian and so I know silly things like looks do not matter. It's a little easier to get over it as it relates to me, but the thought that my son might have it definitely weighed on my mind. It is a load off my mind to know it is not genetic. Keep fighting the good fight!

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  3. My name is Tommy and I'm 15 years old.I also have poland syndrome. I just wanted to let you know that this really helped me. I just want to show my thanks to you. Your a inspiration

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  4. Hey my name is Ken, i too have polands syndrome and I know exactly how you feel. I've gotten so good at hiding my Poland's syndrome that its almost subconscious. I hate it everyday and unfortunately its made me hide away from a lot of things. I'm 32 and not a day goes by I don't stare at my arm and hand wishing and hoping it will be normal someday. I fear I am my own worst critic, most of my friends and my wife simply don't notice or don't care but it still weighs on me daily. I wish I could say that I will come to terms with it but I doubt it will ever happen. It is comforting to see that I'm not the only one and that you have felt what I have felt so thank you for sharing...I know it was hard for you

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    1. Ken you are not alone..its a daily, even hourly battle of the mind. I posted below 10-10-2012 I hope you know we are out here fighting the same battle

      John

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  5. Anonymous said...Hi everyone, My name is John and I have Poland Syndrome. I am 46 years old and having Poland Syndrome sucks. I'm sorry but it does. Life is hard enough without having to hide and deal with a birth defect every day of your life. Like many of you I didn't even know there was a name for my disfigurement until two years ago when I Googled "missing pectoral muscle" and found all this information.

    My life with Poland Syndrome began when I was 10 or 11 years old and my Uncle commented in front of everyone at the pool how my chest looked different. Everyone looked, touched and commented on my chest so my mother made a Doctors appointment for me (this was 1977) and the Orthopedic surgeon stated " your missing your left pectoral muscle, it shouldn't be a big deal" (easy for him to say)

    Time went by and I never gave it another thought until my friends and I began lifting weights. We all started getting bigger and stronger but everyone except me started getting awesome pecs and upper body. This is when I fully realized how this was now a "big deal". My friends and I would go the beach and they would take their shirts off showing off their new phyiques while I hid my deformity behind a towel drapped over my left shoulder. When girls were around I was so self conscience I never felt secure enough to be the real me. I stopped going the gym with my friends and missed all the bonding that goes along with it. I started making excuses why I would not be going to the beach and slowly began getting depressed. I still lifted (alone) because I liked how it made me feel but in front of the mirror I hated what I saw.(still do) My clothes didn't hang right. The more I lifted the more isolated I felt. I ate alot and became angry. I had developed a serious self image problem. I definately developed a HUGE chip on my shoulder.
    I did have alot of dates and girlfriends but being with EVERY SINGLE ONE I worried about them touching and rubbing my chest.
    No one ever made a big deal about it but I still could not let it go. Eventually the love of my life found me and saved me. Although I still had my missing pec life got so busy I didnt think about it except when we went to the beach or the pool. Again I would look at the thousands of bathers and focus how I was the only one on the beach with a messed up chest. (1 out of every 30k, really?) I felt envious and angry. I asked "why me, wtf? More importantly I worried for nine months each time one of my children were born. Thank goodness neither were affected!!!!!!

    It wasnt until two years ago when I read about Polands Syndrome and how it seriously affects people hands, arms and women that I began to accept my condition a little bit more. I guess you can say that I have a mild case in that I am only missing my left pectoral muscle. However,this also affects my left arm too because no matter how many bicept curls I do the arm will not get bigger.
    After many years I've come to better accept my condition and I fully understand that there are others out there with much more serious issues and health problems than I do BUT I own this. This is my deformity and I see it everyday, I live with the feeling of always feeling different. I do all the same things you all do to mask and hide it. Towels are my best friend during the summer and button up shirts are the best for hiding the void.
    I just wanted to write and let others know that I know how hard it is to live with PS. In the grand scheme of things its not a big deal but it does suck.
    Now I concentrate on helthy eating, walking and running and thank GOD my kids are healthy and happy.

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    1. I am a 45 year old man with Polands effecting my right pec. No issues with the arm or hand. I, too, feel my condition is a cross I have to bare, daily. I have had every surgery possible (dorsal flap surgery and many different implants). Despite the amount of money, time and pain spent, it will never look right and will always be a thorn in my side. I view others who whip off there shirts without a problem and I am very envious. It is not fair! I am a runner and lift weights but know that it will never look right. I feel that with all current technology today, there should be something that can be done to fix it and make it look acceptable. I just don't get it. Anyhow, it is good to know I am not alone in my battle.
      Sincerely,
      Christopher

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    2. I am a 39 year old male and never thought of looking PS up. Reading all the comments has me screaming inside because this is exactly how i feel. Thank you for sharing. No matter what anyone says, i'll still never walk around proud with my shirt off.
      Jason

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    3. I am a 39 year old male and never thought of looking PS up. Reading all the comments has me screaming inside because this is exactly how i feel. Thank you for sharing. No matter what anyone says, i'll still never walk around proud with my shirt off.
      Jason

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  6. Hi :) i am doing a report on poland syndrome and while i was doing research, i found this site :) i just want to say that i admire all of you. i personally don't have a birth defect like ya'll, but i have a mental illness called bipolar disorder (which actually isn't what you probably think it is...you should look up on it :) )
    ANYWAY like many of you, i didn't know what was wrong with me until recently, 2 or 3 years ago i think. I am 18 now. I have been letting my disorder control my life, and after reading all of this i realized that i shouldn't be giving in and throwing a pity party for myself!!
    Ya'll have a...what did ya'll call it...birth defect...that is physical and that you can see, but you still carry on with you lives; playing sports, working out, starting families. Most of my friends don't even know that I have the disorder, but i still feel like i am less than them; like they are whole and i am missing pieces.
    I realize now, thanks to all of you, that i just need to trust in God and know that he has a purpose for all He does. I need to be comfortable in my own skin and keep pressing forward the way all of you have. Even when I don't feel like im worth it, i just need to think about all of you, and remember how strong ya'll are, and find the strength to press on.
    GOD BLESS ALL OF YOU
    <3

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  7. I have this same condition. I am missing my left chest muscle, my hands and arms are not affected. I find myself unable to allow anyone to see me without a shirt on and have very low confidence because of my condition. I have trouble with asking girls out as I worry what they will think when they see my chest. after reading your blog I realise there are a lot more people like me, its nice to know im not alone. thanks

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  8. I am 47 years old and have only found out within the last 6-8 weeks that this is a known condition, and with a name to boot aswell. I felt rather alone until lately and can totally relate to all the stories of inner anxieties and of being self conscious. I guess my condition is mild, I am missing my right pectoral and that's it, the rest of my body is quite symmetrical and although I live a normal life, have excellent upper body strength, it was always at the back of my mind, gnawing away. I had thought, years ago, something similar to breast implant surgery could be an option, but decided my chest would be a daily reminder to myself that no-one is perfect and there are a lot more people worse off.....Poland Syndrome taught me compassion and understanding for my fellow being. Thank you for sharing your lives, Godbless.

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  9. I am a 46 year old woman. I am missing the pec muscles on the left, smaller arm and deformed hand. I carry everything with my left arm and hand so that my right hand can open doors and do everything else. I hide my hand in pictures. I do not like people whispering and staring. I choose my clothes carefully, lose baggy stuff. I have always known that I have PS. I went to the university of science crippled children's hospital until I was 13.
    I was developing at that age, the doctor brought in about 15 student doctors and took my apron off in front of them. He was pointing out the differences of each side of my chest. I was so embarrassed, to this day I am scared of doctors and taking off my shirt for anyone.

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  10. I hope what I am about to share isn't too long, but it tells my life story and struggle with not only Poland's Syndrome, but also two other significant areas in my life. I hope it is an encouragement to all who read it.

    My Testimony
    (Summer – 2011)

    I was born with two, physical, birth defects and for a very long time I thought my sexual orientation was a third.
    I gave my heart to Jesus when I was 12 years old and it was a very spiritual experience, which made it all the more real to me. The Church has always been a very big part of my life. The Lord has given me many opportunities to serve Him and for that I am grateful.

    I knew very early in life that I was 'different' and for most of my life, I had pleaded with God to 'heal’ me.

    My first birth defect is that I am missing my right-side chest muscles. It is a condition called Poland's Syndrome. (It was named after a Dr. Alfred Poland). The right-side of my chest was sunken-in and caused me a great deal of self-consciousness and emotional pain growing up. Kids made fun of me in gym class and, being the very sensitive person that God created me to be, it was devastating and hurt me deeply. I prayed to God for many, many years to 'heal' my chest.

    My second birth defect wasn't discovered until shortly after I got married and we wanted to start a family. After a year of 'trying', I went into the hospital for some fertility testing and they discovered that I had another birth defect that prevented me from being a biological father. This was also a very devastating experience for me, and my wife. I prayed to God for many, many years to 'heal' my infertility.

    And then there was the issue of my same-sex attraction and sexual desires. I prayed to God for over 40 years to 'heal' my sexual orientation.

    I viewed these three areas of my life as three curses. Over my lifetime, God has shown me that these were not curses, but amazing opportunities for ministry. I have been given opportunities to show support and encouragement to other people with Poland's Syndrome. I have been given opportunities to show support and encouragement to other child-less couples and now, thru an amazing ministry called the Gay Christian Network, I have been given opportunities to show support and encouragement to other gay Christians.

    I had chest implant surgery to improve the appearance of my chest defect. The Lord has abundantly blessed me with a daughter, our precious gift from God, who we adopted when she was just five days old. God has generously multiplied that one, precious gift, our daughter, into a wonderful son-in-law and three precious grandchildren. (Update: I now have five precious grandchildren) Due to the love, support and encouragement I have received through the Gay Christian Network, I have been able to reconcile my faith and my sexual orientation.
    Several months ago, very early in the morning, while I was still in bed, I felt God speaking to my heart the following message:

    "For most of your life, you have been asking Me to make you into something I did not create you to be".

    My immediate response to this revelation was, "Lord, forgive me for thinking that I knew what was better for me". Then I was drawn to the Scriptures and re-discovered Romans 9:20-21. Those two verses in God’s Word took on a whole new meaning for my life.

    "But who are you, O man, to talk back to God? Shall what is formed say to Him who formed it, 'Why did You make me like this?' Does not the Potter have the right to make out of the same lump of clay some pottery for noble purposes and some for common use?"

    From that moment on, I have experienced the 'Peace that passes all understanding'.
    May you be encouraged by what the Lord has done and is doing in your life.

    Bruce Strine
    Westminster, Maryland

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  11. Hi I'm a 17 year old girl with Poland syndrome and it's destroying me and I need someone to talk to , it's an embarrassment and I just think I simply can't cope for much longer and cant afford surgery I don't know what to do anymore just knowing I'm going to feel like this forever just isn't worth it to me, any advice ?

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    1. Like your problem I am 17 years old and I don’t know what the solution is m scared 2 tell anyone about this problem ...its killing me every fking day.. its 2020 right now did you have an operation or found a solution for it and if u do how much its cost the Surgery

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    2. im asking because ur letter was from 2019 (bad english)

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    3. You've got to talk to someone about it. You can't keep it hidden inside as a secret. I have accepted myself the way I am. I still struggle with it daily, but my body image issues are more under control because I've found peace and worth in my identity as someone who is loved by God no matter what I look like. I've found self-worth in how Jesus sees me rather than how I see myself. Every day I have to remind myself that. Every day it's a struggle.

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    4. im a 16 year old girl with polandsyndrome i have my minor pectoral and i notice some growth with exercise but theres no miracle solution sadly but i feel youuu i dont talk to anyone about it either i try to hide it as i can. Ive never came across anyone with ps until i found this blog id like to talk about it you know someone that actually understands !!

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