“The Day I Realized Pain Wasn’t for Me”

 

🩹 “The Day I Realized Pain Wasn’t for Me”

A Retrospective Interview with a Person Living with Congenital Insensitivity to Pain (CIP)

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Interviewer: Thank you for being here today. Could you start by telling us when you first realized that your experience of pain was different from others’?

Interviewee (Sara, 29):

I think it really began when I was around five. My mother tells me I broke my arm while playing on the swings — and I didn’t cry. I actually walked back home holding my arm at an odd angle, telling her I felt “funny.” That’s when the doctors started running tests. Eventually, they told my parents I had something called Congenital Insensitivity to Pain with Anhidrosis, or CIP. I couldn’t feel pain — and I didn’t sweat properly either.

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Interviewer: That must have been difficult to understand at such a young age. What was it like growing up with that condition?

Sara:

Honestly, as a child, I thought it was a superpower. Kids would scrape their knees and cry, and I’d be the one saying, “See? I’m fine.” But that “fine” came with hidden dangers. I once bit my tongue so hard that I needed stitches, and I didn’t even notice. I’ve burned my hands, fractured bones, even walked around with an infection — because my body never warned me something was wrong.

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Interviewer: For those who might not know, could you explain a little about what causes CIP?

Sara:

Sure. It’s a rare genetic disorder — incredibly rare, in fact, only a few hundred known cases worldwide. It’s usually caused by mutations in a gene called SCN9A, which affects how nerve cells transmit pain signals to the brain. Basically, the “wires” are there, but the messages never reach their destination. My body can still feel temperature or touch, but pain — the body’s alarm system — is completely silent.

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Interviewer: How does this condition affect your daily life now as an adult?

Sara:

It’s a full-time awareness exercise. I have to think about what most people just feel. I check my feet every night because small wounds can get infected. I can’t tell when I’m overheating, so I avoid long exposure to the sun. I use mirrors to check for bruises or burns. You could say I live by constant surveillance — not out of vanity, but survival.

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Interviewer: That sounds emotionally exhausting. How do you cope mentally and emotionally?

Sara:

There were years when it was frustrating — people assumed I was “lucky” not to feel pain. But pain isn’t just suffering; it’s feedback. It teaches you limits. I’ve learned to replace that missing signal with mindfulness and observation. Yoga helps, as does journaling. And therapy — not for pain, but for the anxiety that comes from not knowing when something’s wrong.

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Interviewer: Are there any treatments or ongoing research that give you hope?

Sara:

There’s no cure yet, but researchers are studying gene therapies targeting the SCN9A and NTRK1 mutations. Some scientists believe that by restoring or modifying those pathways, pain perception could be partially reintroduced. For now, it’s mostly about prevention — regular checkups, temperature regulation, protective clothing, and awareness.

But I’ve seen progress. There’s even research that could use what we learn from CIP to help design new painkillers — to selectively block pain without shutting down the rest of the nervous system. That gives me hope.

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Interviewer: That’s beautifully said. If you could share one message with others who might have CIP or a similar rare disorder, what would it be?

Sara:

Don’t romanticize being “different” — learn from it. Pain, even though it hurts, connects us to our body and to each other. I’ve learned that the absence of pain doesn’t mean the absence of struggle. We all need to listen to ourselves, in whatever way our body lets us.

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Closing Reflection:

Sara’s story is a reminder that pain, while often feared, is a fundamental teacher — one that protects, guides, and grounds us. Her life unfolds in the quiet spaces where the body forgets to warn but the spirit refuses to surrender.

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🧠 Medical Snapshot — Congenital Insensitivity to Pain (CIP)

Cause: Genetic mutation (commonly SCN9A, NTRK1, or PRDM12) affecting pain-signal transmission in peripheral nerves.

Symptoms: Inability to feel pain, self-inflicted injuries, bone fractures, burns, oral trauma, infections, lack of sweating (anhidrosis), and overheating.

Treatment: No cure; management includes preventive care, temperature control, physiotherapy, wound monitoring, and psychological support.

Prognosis: Lifelong condition; early education and environmental awareness significantly improve safety and quality of life.

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