Isolation and Pectus Excavatum

Having pectus excavatum (PE) can be isolating.

Other people in your life probably don't have it, and therefore probably don't get what it's like. Often even nurses and therapists have never heard of it.

On top of it, PE is usually hidden under clothing, invisible. So the general public isn't very aware of it at all, and people in your life might not even know that you have it. If they do, they won't really understand what it is.

So it falls on you to educate the people in your life about what it means to have it, which can suck if you don't enjoy talking about it.

Among the people that have it, each person will experience it in a different way. Some people are really bothered by it and develop depression or anxiety, or avoid dating. Others couldn't care less. Some get teased or bullied for it, some don't.

There are so many variables that impact one's experience of PE. The most obvious ones relate to the PE itself. How deep is it? Is it symmetrical? Does it mess up your breathing? Does it warrant invasive surgery to get rid of it?

Gender is another major experience-shifter. The chest is a very sexualized area for both men and women but in different ways. Intersex and trans people will relate to their bodies differently than cis-gendered folks.

Age is another one, physically and mentally. Are your bones still pliable enough for treatments? Have you become more self-confident as you've grown up?

Even social class comes into play. Can you afford the surgeries or psychological treatments? Is your mental energy taken up by other stressors like meeting basic needs? Do you have what's needed (languages, insurance, education, internet/computer access, etc.) to access resources?

It's human nature to want to connect with similar others; there are lots of places on the internet where people with PE go to chat. But sometimes even scrolling through these supportive communities can be triggering. (Emphasis on the sometimes– usually connecting with others who have PE too is a really empowering experience, and de-isolating.) Someone who can't afford surgery or who is too old for it might feel low reading about how happy others feel post-op. Someone looking to feel more positive might not want to read how others have struggled psychologically for years. And so on.

Anyways, if you have PE, odds are that you feel different from others– even others who have it too.

Learning what works for you to reduce your own sense of isolation is important. This could mean strengthening the relationships in your life in general, with family, friends or significant others. It could also mean taking the time to find someone else who has a similar relationship to their PE. Or talking to a therapist. And this probably goes without saying, but if anyone ever makes you feel bad about having PE, avoid them. Sometimes isolation is a healthy thing.