Why I Resisted, Then Agreed, to Show Off My Congenital Heart Defect Scar at a Photo Shoot


Earlier this year, I posted a tweet that seemed to resonate with some of my followers: “As a child, I was very self-conscious about my scar. Today, it serves as a reminder of my inherent strength and resilience. #CHDlife”

ken's tweet

Whether or not a person has a congenital heart defect (CHD) and its related scars, I think many of us struggle with body image issues.We’re too fat, too skinny, too tall, too short, too hairy, or too smooth; and we must fix these faults — at least that’s what popular culture wants us to believe. And there are countless businesses making ridiculous sums of money off us by offering just the right tools, tips, tricks, creams, ointments, pills, supplements, workout plans, self improvement guides, and diet fads that promise to correct our “flaws.”

What I wrote in my tweet was absolutely true. When I was younger, I was extremely self-conscious about the scar down my chest, and I almost never wanted to take my shirt off at the pool or the beach. I was also not happy with my weight as a kid, so a swim shirt was the appropriate cover for both of those “flaws.” Because somehow — even if just in my own mind — that piece of material covering my torso would hide those “flaws” and help me fit in (or, at the very least, not stand out in such an uncomfortable way) among my peers.

As a teenager, I had my adolescent growth spurt and lost weight in the same year. In college, I came out as gay. And even though I never fully saw myself in the stereotypical gay community (partying, boas, parade floats, pride flags, washboard abs and casual sex), I found myself facing a new challenge. While I was no longer overweight, I certainly did not have an Adonis body with six pack abs to show off in a Speedo. Oh yeah — and I still had this unsightly scar down the center of my chest. So if I didn’t look like other gay men (at least not like those often portrayed in the media), would I be able to fit in with “my” community?

As human beings, we are social creatures, and it’s natural for us to want to connect with others and have a sense of belonging. Yet I often find myself thinking about a powerful quote attributed to Ian Wallace: “Why are you trying so hard to fit in when you were born to stand out?” I recognize that there can be some comfort in conformity, and standing apart from the mainstream is not always desirable or even socially acceptable. But I firmly believe that going through life as a lemming is no way to live.

I also believe that those of us with a congenital heart defect naturally stand out, whether visibly or not. Life with CHD, or any chronic illness for that matter, comes with its own set of challenges. We CHDers sometimes have to plan and prepare for things a bit differently than others in the crowd. For many of us, a routine visit to the dentist requires getting a prescription filled in advance for prophylaxis. For those of us on blood thinners, a minor cut can quickly become quite problematic. And a simple trip to the airport may require a special security screening because of various metal objects in our bodies.

But even with these challenges and the visible scars that grace many of our bodies, I believe it is important for us to accept, embrace, and celebrate the attributes that make us unique. Now I would be lying if I said that I succeed at doing this all the time. In fact, far from it! There are the occasional times when I still feel self conscious about the scars from my sternotomy and chest tubes. And there are times when I mentally think of myself as the kid I knew during my formative years. Sure, I can look into a mirror and know that this is not true, but the mental image can sometimes overpower the visual reflection that I see.

At the Adult Congenital Heart Association‘s 8th National Conference in June, a professional photographer was taking photos of adult CHD patients who wanted to show off their scars. I loved the idea but initially resisted participating. I found myself feeling overly self conscious, and the thought of unbuttoning my shirt for a photo shoot momentarily brought back the awkward and uncomfortable self image issues I had as a youth. But then I realized that I would be missing out, and I thought to myself: screw it, just do it! It’s not about vanity. It’s about proudly showing off a unique physical feature that many adults living and thriving with congenital heart disease possess.

ken showing his CHD scar

In my hometown of Chicago, there is a wonderful and brilliantly simple campaign made up of stickers and public art installations throughout the city. As described on the project’s website, You Are Beautiful is “Three short words. One powerful message… Grabbing strangers unexpectedly in the grind of their daily life, and unapologetically saying it’s OK to be human.” I absolutely love this project and the message it sends out into the world. And I believe the scar photos taken at the conference perfectly illustrate this message: Life with CHD may not always be easy (and we’ve got the scars to prove it), but you (as a person, as an individual) are beautiful! So take pride in who you are — in the scars you bear — and proudly show the world your inherent strength and resilience!

* * *

To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.

– Ralph Waldo Emerson

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