We’ve all had bug bites, or dry scalp, or a sunburn that causes itch. But what if you felt itchy all the time — and there was no relief?

Journalist Annie Lowrey suffers from primary biliary cholangitis (PBC), a degenerative liver disease in which the body mistakenly attacks cells lining the bile ducts, causing them to inflame. The result is a severe itch that doesn’t respond to antihistamines or steroids.

“It feels like being trapped inside your own body,” Lowrey says of the disease. “I always describe it as being like a car alarm. Like, you can’t stop thinking about it.”

PBC is impacts approximately 80,000 people in the U.S., the majority of whom are women. At its worst, Lowrey says, the itch caused her to dig holes in her skin and scalp. She’s even fantasized about having limbs amputated to escape the itch.

Lowrey writes about living with PBC in the Atlantic article, “Why People Itch and How to Stop It.” She says a big part of her struggle is coming to terms with the fact that she may never feel fully at ease in her skin.

“I talked to two folks who are a lot older than I was, just about like, how do you deal with it? How do you deal with the fact that you might itch and never stop itching? … And both of them were kind of like, ‘You put up with it, stop worrying about it and get on with your life,’” she says. “I think I was mentally trapped … and sometimes it’s like, OK, … go do something else. Life continues on. You have a body. It’s OK.”

Interview highlights

On why scratching gives us temporary relief

Scratching, it engenders pain in the skin, which interrupts the sensation of itch and it gives you the sense of relief that actually feels really good. It’s really pleasurable to scratch. And then when you stop scratching, the itch comes back. And the problem is that when you scratch or you damage your skin in order to stop the itch, to interrupt the itch, you actually damage the skin in a way that then makes the skin more itchy because you end up with histamine in the skin. And histamine is one of the hormones that generates itch within the body.

On the itch-scratch cycle

Histamine is an amazing chemical that does many, many, many things in our body and it’s part of our immune response. It leads to swelling so the body can come in to heal. And the scratching is meant to get whatever irritant was there off. And the itch-scratch cycle ends when the body heals. So I think that that’s all part of a natural and proper cycle. That’s part of our body being amazing at sensing what’s around it and then healing it. But we have some itch that’s caused by substances other than histamine. We’ve only started to understand that kind of itch recently. Similarly, we didn’t really … understand chronic itch very well until recently. And we’re in a period, I’d say in the last 20 years, of just tremendous scientific advancement in our understanding of itch. 

On why itching is contagious 

There’s actual studies that show that itching is contagious. So watching somebody scratch will make a person scratch. There’s this interesting question: Are people scratching empathetically in the way that we will mirror the movements of people around us, in the way that yawning is contagious or crying can be contagious? But it turns out that, no, it’s probably a self-protective thing. If you see somebody scratching, there’s some ancient part of your body that says that person might have scabies, that person might have some other infestation. I’m going to start scratching to get this off of myself because scratching is in part a self-protective mechanism. We want to get irritants off of the body, and that’s in part why we scratch.

On thinking of itch as a disease

When scientists said that itching is a disease in and of itself, what they meant was that chronic itching changes the body’s own circuitry in a way that begets more chronic itching. That implies that itching is not just a side effect, it’s a body process in and of itself. And so instead of just being a symptom … itch itself can kind of rewire the body and can be treated as a condition unto itself. And a lot of dermatologists see it that way. It’s often a symptom, often a side effect, but sometimes it’s really its own thing in the body.

On the social stigma around itching

If you saw somebody scratching themselves on the subway, would you go sit next to them? No, of course not. Just instinctively, I think you have that self-preservation mechanism. … It’s a really deep thing: Don’t get scabies. Don’t get bed bugs. Don’t get ticks on you. … I don’t think that people are trying to be cruel. I think there’s something deeply hardwired in there. … Like, don’t approach the mangy dog that looks like it has fleas all over it. Don’t approach the human that’s compulsively scratching themselves, which is socially coded in the same way that, like, chewing with your mouth open is. It’s not something that is an attractive thing to do.

On considering why so little attention paid to itch compared to pain 

Pain is so awful and I would never say that there’s something ennobling about pain. But I think that there’s a certain amount of social respect [given] to people who are going through [pain], and itching — you kind of sound like a Muppet. … You look like a dog with fleas. It’s embarrassing to scratch yourself in public. It’s inappropriate to scratch yourself in public. I think people just kind of don’t take it very seriously. I’ve also thought a lot about how, like, if you had a chronic itching support group, everybody would come into it and then just start scratching themselves, and then make everybody else itchier by being in the simple presence of people who are itchy. It’s something that people suffer through alone.

On finding acceptance 

I do think that even if I can’t quite come to terms with the itch, I have come to much better terms of the gift of being in a body that is getting sick, the gift of being in a body at all. … I always want to be careful to note … that I don’t think that illness is any kind of gift. And I don’t think that there needs to be upsides to bad things happening to people at all. But I do appreciate the insight that I’ve had into myself, even if I wish that I never had occasion to have it. …

You can endure a lot. Your body is going to fail you. It can feel completely crazy-making and obsessive and miserable. And you can survive it. You can just keep on breathing through it. You can do really amazing, wonderful things. And again, that’s not to say I think that it’s worth it, or that I’m taking the right lesson away from it. … Not everything needs to be a lesson. You don’t need to respond to things that are unfair and difficult in this fashion. But writing the piece led me to a much greater place of acceptance, and I really appreciated that.

Monique Nazareth and Anna Bauman produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.