Steven Pete is 41 years old, and he’s never felt physical pain. He has a rare condition called congenital analgesia, or congenital insensitivity to pain (CIP), which means that, while he can feel touch (and, of course, emotional pain), he can’t feel broken bones, burns, infections — basically anything that would typically hurt.
But it’s not the utopia you might imagine. In fact, living with CIP, and therefore frequently facing his own mortality, has taken a heavy toll on Steven’s life — not least 14 years ago, when his brother, who also suffered from the condition, took his own life. Here, Steven tells you, in his own words, what it’s like growing up and living a physically painless life.
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When I was around six months old and I was teething, I chewed off the tip of my tongue. This, unsurprisingly, freaked my parents out, so they took me to the local pediatrician. He kind of had an idea of what it could be, so to test it, he took a lighter underneath my foot and held it there until the skin started to blister. When I didn’t cry or elicit any kind of painful response to it, he was like, “Yep, I’m pretty sure he doesn’t feel pain.” It wasn’t until 2012, though, that I got an official diagnosis, because the research and genetic testing wasn’t available until I was an adult.
To give you a good example of what this means, let’s go back eight years. It was snowing outside, so my family and I went to the woods with some snow tubes. As I was going down the hill, I went airborne, but when I came back down, I hit the ground and scorpioned — you know, when your legs go over the top of your head. I laid there for a moment in the snow, before getting up and just walking it off. I didn’t think much of it. Around three months later, the feeling in my left arm was kind of going out, and I was losing the ability to sense certain things. Then I started developing a tingling sensation. So I go to the doctor and get a CT scan.
When the orthopedic specialist comes into the room, he’s like, “Have you been in a car wreck? Have you been bungee jumping? Skydiving?” He told me I’d sustained a serious injury to my back, and my spine had three fractures. It could have resulted in me becoming paralyzed, but I had no idea I’d even done it.
With the exception of that — which was probably the scariest injury I ever got — over time, after experiencing injury upon injury, you do learn how much force is too much force or how much heat is too much heat. You learn what it takes to damage your body and injure yourself. So even if you don’t have that pain component there, the moment you slam your leg into something hard, you’ll know whether or not you’ve caused damage to yourself.
One of the things my parents did when I was younger was to mentally condition me and my brother — who also had congenital insensitivity to pain — to say “ouch” when we hit ourselves against something, or when something hit our bodies. That way, even though we didn’t feel the pain from it, we were mentally taking a note of, “Hey, something just happened to me, I should check on it.” I still do that to this day.
People always ask me what my impressions of pain are, but I can’t answer because I’ve never experienced it before — it would be like asking a blind person what it would be like to see. Basically, I have a total absence of pain altogether, with the exception of emotional pain. I don’t feel things like muscle strain, nor the pain of pushing myself too far, but — like everyone — my body does reach its physical limit. If I’m outside working in my yard during a warm day, and I’m out there for way too long, doing strenuous work, my body doesn’t send me a signal to stop, but it does just eventually sort of collapse. I can still feel my body reacting to things like dehydration and exertion, but I’ve had heat stroke a couple of times because, until it’s too late, I can’t tell when I’m overextending myself. I do feel tired, though — but if I’m preoccupied, that feeling doesn’t really hit me.
Although CIP doesn’t really affect my relationships, it’s had a huge impact on my mental health. When I was younger, we didn’t have access to the technology that we have today — so there was no genetic testing, no sharing of information about CIP and no ability to find other people who share this rare condition. Growing up without that was hard. Also, I was always told from a young age, “The chances of you making it to 10 or 13 or 18 aren’t likely.” Being told that you won’t live a long life can make you reckless. Plus, with CIP, you spend a lot of time in the hospital with children who do feel pain — and sometimes you’re sharing a room with kids in terminal states, and you build a relationship with them because you’re both there for a long time, and then you lose them. You’re not only facing your own mortality, or the threat of your own mortality, but you’re also witnessing other children passing.
It wasn’t until I found a community — via my mom starting a newsletter when I was a kid, and then the advent of Facebook — that my perspective changed, and I started to seek out betterment for my own mental wellbeing. It’s nice having a place where you can belong, and not feel isolated and alone with your condition.