There’s a very rare hereditary syndrome known as CIPA (Congenital Insensitivity to Pain and Anhidrosis) in which people are incapable of feeling physical pain. They have no sensitivity to temperature and partial or complete inability to sweat. Most who are diagnosed with it don’t live past their mid-twenties. For people who literally cannot feel pain, life is, oddly enough, short and brutal, and sometimes “no sweat” puts you at seriously elevated risk for heat stroke and seizures.
Excluding the three-digit number of people known to have this syndrome, though, pain is probably our most universally shared experience. We all know what it is and what it does, so why the hell is it so hard to understand? Doctors still have no idea how to treat it. And if you live with it as your full-time ride-or-die bestie, you quickly discover that no one, even people who really do love you, can handle your bestie for long. We’re annoyed by other people’s pain. No: we’re terrified of it, and we’re annoyed that we’re being put into a confrontation with that fear.
Ask anyone who lives with chronic pain or disability, “Who’s always there for you?” I guarantee you, the answer will be “no one.” Not your doctor. Not your partner. Not your children. Not your friends. Not your shrink. Not your siblings. Definitely not your cat. Most humans enjoy a neurological system entirely capable of producing and delivering a chemical called dopamine thus no direct experience in being paralytic one hour then shaking violently the next. In their reality, brain signals actually reach the intended target without disruption.
This is common and it’s not because everyone’s selfish or uneducated about pain or “lacks empathy,” although that can be true of some people. We all have to protect and preserve our own energy, and other people’s pain cannot be our full-time focus. It’s exhausting just being in the same room with it, honestly. Denying the validity of another’s experience just because it’s uncomfortable or unrelatable or inconvenient doesn’t make it go away. Yet matter how closely connected we may be, it’s nearly impossible to fix someone else’s pain, though we might wish we could. Ultimately we need to focus our limited resources on problems we can solve. Of course I have to do the same thing! I have to tell people I love that I cannot hold space for their pain all the time.
But there’s another face to this as well. When you’re in intense pain—physical or emotional—you become incapable of focusing on anything else. Live with it long enough and your toxic roommates Pain and Shame will disable your ability to see things from anyone else’s perspective, even if you’re theoretically good at that. Even if you’re an “empath.” Have we reached a scary point in the arc of history when we have to have a special term for “people who are very aware of other people’s feelings?” Empathy means you’re normal, not so rare and special that you need to mention it along with your preferred pronouns when introducing yourself.
Pain is a jealous pain in the ass who will not readily share you, including with the people who actually are generally there for you. Chronic pain cuts you off from normal contact with the world outside its own tiny little cell. It locks you up like Ingrid Bergman in Gaslight until you start absolutely believing you’ve lost your shit. Given the level of noise caused by our collective agnst alone, it’s no wonder how help could be standing right in front of you and you might not even notice it. Our intentions of being helpful are too easily hijacked by the viral illusions of seperateness or scarcity. Less “What’s in it for me?” and more “How may I be most useful?”, please.
I’ve been wondering if traits like extreme narcissism aren’t really the absolute height of pain. People with profoundly narcissistic, antisocial or sociopathic personalities mostly get talked about for the pain they inflict—but the pain they are in might be worth mining for understanding. Those people, the opposite of the “empath” type, are incapable of experiencing normative emotions. They hurt other people because they fundamentally don’t understand or experience remorse, regret, or compassion, just like people with CIPA don’t feel anything when their own bones break. They exist in a wind-tunnel of their own; an unshared, unshareable, self-absorbed hell. They experience a limited spectrum of primal emotional states (rage, excitement). The especially adaptive and crafty ones can be very good at faking feelings by observing and mirroring other people. But they innately lack the capacity for love or joy or grief. These traits make narcissists and sociopaths unbelievably hard to feel sorry for—but arguably, we should. Their inner landscape is basically an empty theater. That’s a horrible way to have to live, and they didn’t choose it any more than I chose Parkinson’s.
Interestingly, you don’t need that much distance from pain to benefit from it—when it stops even for a few minutes, you can be filled like a tide pool with a sort of beneficent calm in which it is possible to love and forgive absolutely everyone and everything. In that space, you can confront your own darkest thoughts and put them aside. You can experience a flood of emotional generosity and gratitude, an upwelling of strange connections and insights, or a heightened sense of connectedness to your fellow humans and to the nonhuman world. Pain casts a long shadow making it thoroughly impossible to be grateful for in the moment, but when you live with it chronically and it finally steps outside for a smoke break, you enter a world of radical receptivity—Emily Dickinson’s “formal feeling,” perhaps, or John Keats’ “negative capability,” where you notice the silence between your own heartbeats.
I still don’t know what to do about the days when the pain doesn’t have an off-switch, but I’m thinking a lot about people who can’t feel things. In my weakest moments I wish I could join them, but it turns out feeling less is no gift. They might be showing up more often because they have something to teach us. And if I figure out what the hell that is? You’ll be the first to know.