Welcome to the Enchanted Body Trust Forest
It is cool and calm here, but also warm and welcoming
We are a Fat Friendly Space, like Cat Pausé’s Friend of Marilyn Podcast ♥
Body stories are largely missing from the zeitgeist of our time. We are often reluctant to dive into our body stories because we believe they are too taboo to share or too boring to be of interest or value.
In Reclaiming Body Trust, we shared body stories of those who have defied the standard narrative of body apology, instead demanding care and deep respect. These stories, once unearthed, encouraged others to share theirs, too.
Here is Colleen’s Story.
“The story of my body is one that has hidden in the shadows, underneath three-quarter sleeves and shirts with rounded collars and high necks. For years, I attempted to define my body through an obsession with being a smaller size because that was the one way I might pass for “normal.” One way people might find me acceptable or even attractive. One way I could forget for a moment that my body was deformed and burned and has been ever since I can remember.
I was born with a very rare birth defect called Poland Syndrome. What that means for me is that my left pectoral muscle is missing, as is most of my back muscle (latissimus dorsi), partial formation of some ribs, and skeletal abnormalities in my chest, back and shoulder that are hard to describe. Oh, and my breast. That’s a big part of my story. Some people with Poland Syndrome don’t even have a breast on the affected side. I have a very small left breast that is extremely high up sitting on a concave chest cavity with an inverted nipple (again, the norm for this syndrome, if you get a nipple at all). My right breast was not affected and developed normally. Poland Syndrome only impacts one side of the body, in my case the left side. Nobody knows what causes it, but the best guess is that there is a cut-off of the blood supply for a few seconds in-utero around 6-9 weeks. My right side would have looked normal if it weren’t for the third degree burn scar that covers my upper right arm up to my underarm. Puberty was a nightmare. I remember distinctly the my-skin-is-crawling-get-me-out-of-my-body sensation that would come upon me, almost always in bed at night. I remember feeling so disgusting and grotesque. So ugly I would make my own skin crawl as I cried looking into the mirror without a shirt on.
Growing up I hid my burn scar that I got from an unattended cup of tea that I spilled on myself at 18 months of age. I would always wear sleeves that came to my elbows, even in the summer. Around the age of 12, I had another reason to hide as my breasts began developing, or should I say, my right breast started developing. I started cutting out shoulder pads from shirts and putting them in the left side of my training bras. This was the late 80s. They looked awkward and weird. Just like me. One of my scariest memories is swim class in ninth grade. You had to change in front of others, wear a swimsuit, and then take a shower. It was terrifying. As an adult, people sometimes tease me for not knowing how to swim. I only recently made the connection around why I don’t like the water and never learned to swim.
At age 23, I got my first job with health insurance, as my family didn’t have any growing up since we struggled financially. That facilitated me finally seeing a plastic surgeon in my adopted home of Washington, DC. It felt like a dream come true. Someone who could fix me! She was the one who told me about Poland Syndrome. Finally, I had a name for it! Since this was 1998, there were no internet Facebook groups like there are now, or really any information online. I got handouts with drawings of other people “like me.” The plastic surgeon outlined some grim surgeries and I went with the least scary–reducing my right breast, which was now a full size D (compared to my barely B left side). She would loosen the scar tissue from my burn around my right under arm for comfort. She’d also try to “fix” my inverted left nipple (which didn’t work). This surgery was 20-years ago now. I thought it would change everything. It was a good choice, but my breasts still look VERY different, are smaller than natural for my frame, and I lost complete sensation in both nipples due to the surgery. And now that I’m 43, my right breast is aging normally and my left one remains what feels like suspended in mid-air, without the pectoral muscle weighing it down.
But another story that was hiding in plain sight was my binge eating disorder and my exercise compulsion. Controlling my body made sense. Making it look “its best ” since it could never be normal seemed a logical solution. I’ve always been fighting with wanting to both garner and avoid male attention. I sought validation that my body wasn’t gross yet feared the worst—being rejected for my breasts in this very breast-centric culture. I was terrified for a man to see my deformed breasts. I was always shocked if people found me attractive because I felt like there was this monstrosity they couldn’t see underneath. I felt like a fraud.
It wasn’t until the Body Trust training did I realize that while I successfully stopped binge eating many years ago, I had traded it for a workout obsession that I did not recognize at all as disordered. Thankfully, I had stepped away from exercise for about 4 years when I found the Body Trust work, so that concept was fully able to seep in. It was time to see my past through a more adaptive, compassionate, contextual, and wider lens.
I’ve also noticed now that I’ve completely stopped monitoring food and exercise that there exists a persistent body “story” around looking good in clothes because out of clothes I am unacceptable (a story I share with many, undoubtedly). I’ve also recently gained weight and am in the largest body I’ve lived in so far. This has triggered the idea that a smaller body somehow “made up” for my deformities—an idea, sadly, rooted in fatphobia. The Poland Syndrome is exacerbated when my body is larger, especially since the left side of my chest and rib cage area does not accumulate much body fat (no idea why), so my chest looks even more disproportionate. Now I know why on all three of the Poland Syndrome Facebook groups SO many people are seemingly obsessed with working out and posting pictures of their fit bodies. It’s as if by doing that, we can undo something else. I wonder what the prevalence of eating disorders is within this community. I’ve also noticed on these forums a lot of talk about corrective surgeries and worried moms fearing their child will suffer or be rejected. What is absent, however, is a thread of acceptance or how to work towards acceptance with this type of body. I’m hoping one day that will be the contribution I will make.
I needed to tell this story, partially to just have others read an honest description of my body. One that isn’t sugar coating it. One that is honest and no longer hiding behind a high-neck shirt or three-quarter sleeves.”
What is the story of your body?
Collectively, we need to hear more body stories of others in order to feel less alone in our own. If you’re open to sharing your body story, we invite you explore our body story prompts and submit your own story here.
Your story has the power to change how we regard all bodies. Thank you for telling it.