Fresh Air - Why Do We Itch?

Episode Date: November 12, 2024

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? Atlantic 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. She talks with Terry Gross about finding a diagnosis, treatment, and what scientists know about itch.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Transcript
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Starting point is 00:00:00 This is Fresh Air. I'm Terry Gross. Stress and anxiety can lead to itch. So I would imagine a lot of Americans have done a lot of scratching over the past few months. There's the kind of itch that you scratch and poof, no more itch. But sometimes, the more you scratch, the more you itch. And then there's the kind of itch that is so alive,
Starting point is 00:00:20 explosive, persistent, and all-encompassing that nothing seems to help. And it hijacks your brain. That's the kind of itch that my guest, Annie Lowry, writes about in her Atlantic Magazine article titled, Why People Itch and How to Stop It. It's about what researchers are learning about itch and how that's opening the door to new treatments. Lowry suffers from itch so intense she's dug holes in her skin and scalp and once asked a surgeon to amputate her limbs. Her issue is related to a rare and degenerative liver disease.
Starting point is 00:00:54 Part of her article is about her own itch and the extremes it's led her to. Lowry is a staff writer at the Atlantic focusing on the economy and politics. She's a former staff writer at the New York Times and New York Magazine. Annie Lowry, welcome to Fresh Air. Is today an itchy day for you? It is. I have been itchy for about four days now. So we're talking during the daytime, so I'm not terribly itchy.
Starting point is 00:01:21 But my feet are itchy, my scalp is itchy, and my hands are itchy. But it's like a two out of 10, it's manageable. So, so people are very dismissive of itch. And I want you to describe what your kind of itch feels like. At its worst, it was like having poison ivy in the acute phase of poison ivy, although my skin didn't show anything.
Starting point is 00:01:45 There was no rash or anything like that. And it was completely maddening. It was impossible to do anything other than focus on scratching or trying to find relief from the itching. And the type of itching that I have is not sensitive to the medications that we have that normally turn the itching dial down, so the two big ones being steroids and antihistamines. And it just became all-encompassing.
Starting point is 00:02:11 I would spend hours in cold baths. I would walk to try to get rid of the itch. It was most intense. I've been pregnant twice. I have two kids. And at the end of one pregnancy, I asked my surgeon, I was like, if this doesn't stop I don't want these limbs on my body anymore. It was really debilitating and I'm not like that all the time and in fact the itching
Starting point is 00:02:34 has never been quite as severe as it was in my pregnancies. Now the itching is much calmer although it is persistent but it comes and goes. At its worst it's really, you know, just like pain is debilitating, itch is debilitating. Okay, so you mentioned that you were especially itchy on the bottom of your feet, your hands, and your scalp. Are those, if I use the word, popular sites for itch, and if so, why? I mean, a lot of people go around scratching their scalp. The amount that you might itch and the place that you might itch has to do with the network
Starting point is 00:03:08 of nerves inside your body and the messages that those nerves are receiving from chemical irritants from outside your body or the chemical messengers within your body. And my understanding, and I'll just note that I am not a scientist, I am not a doctor, I am a lay person who knows a lot about this, unfortunately, from experience, is that when you have a lot of basically itchy receptors, nerve fibers that accept itch and you have a lot of chemicals that engender itch like histamine and others in those sites, you'll feel itchy. And one thing that happens to me and I know happens to other people with chronic illness who get itching is that it actually,
Starting point is 00:03:45 you'll feel itchy on the inside of your body. Like, you know, in your guts, right? Like part of your body that has, you know, you're not itchy on your skin and you can't get to it, so there's no way to scratch it. And I remember talking with a number of dermatologists who were like, well, you don't really have the nerves for itching on the inside of your body.
Starting point is 00:04:02 And, you know, I would talk to other doctors or patients, people who itched, and they'd be like, no, no, no. And I felt this way, too. I was like, no, I swear that I feel it. And I finally found this one neuroscientist who was like, oh, no, no, some of those fibers exist inside your body. So yeah, anywhere where you have those, there's probably a little bit of itching possible.
Starting point is 00:04:21 And I felt very, very good knowing that. But yeah, so I think that your hands are just enormously sensitive, right? Like so many of these touch receptors and and receptors for hot and cooler on your hands I think your feet and your scalp are also places that are just really really sensitive in your body. Whereas, you know, like You know the small of your back or something might be less less innervated in that way I'm gonna quote you you write it becomes a constant obnoxious and shrill reminder that you are in a body. Describe what it means to you to be constantly reminded that you're in a body. Why don't you want that kind of
Starting point is 00:04:59 reminder and does it make your body feel like an opponent? Absolutely. I've tried to come up with a lot of metaphors for itching and I feel like an opponent? Absolutely. I've tried to come up with a lot of metaphors for itching, and I feel like we have a lot of metaphors for pain, right? Unfortunately, all of us in human bodies experience pain, and often really severe pain, and itching is basically a universal phenomenon also. But itching feels kind of qualitatively different to pain,
Starting point is 00:05:22 at least to me in some ways. It can be really hard to tune out. I always describe it as being like a car alarm, right? Like you can't stop thinking about it. It interrupts you somehow. It feels like being trapped inside your own body. And you know, maybe pain has these qualities for other people.
Starting point is 00:05:40 Sometimes I describe it as like a feeling of drowning. It creates in me a sense of fight-or-flight But there's nothing to flee from and nothing to fight. I guess you can scratch yourself and you're fighting your own body It has this kind of hallucinatory strange quality for me Sometimes you're feeling things that aren't there and sometimes I even get that sense I will feel things on my skin when I'm looking at the skin and there's nothing there. And it can be spooky in a way. And notably there's lots of different ways to feel itchy.
Starting point is 00:06:12 There's burning itch, there's kind of electric itch, there's sunburn itch. Our brain is amazing at sensing things in unbelievably refined ways. And so, yeah, you know, sometimes it's just a bug bite and sometimes I'm like, I could write a book trying to describe this. Well, let me ask you if you experienced this. Sometimes when I get the kind of itch that if you scratch it, it just gets worse. So the first time you scratch it, it's like it explodes. It's almost like it bloomed, it blossomed, it's climactic,
Starting point is 00:06:48 but at the same time, you know, the climax and then it ends, right? But with itch, it's like it explodes and then it kind of keeps up at that like high level. It doesn't stop. Absolutely. Yeah. So that's a strange thing about itch. I just realized I'm scratching my scalp as we talk. I think everybody who listens to this is going to do that. We can talk about why that is. Why is that? Tell me why that is. So just to go back to one thing that you said, and then I'll answer that question, but yeah, 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.
Starting point is 00:07:27 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. But to go back to what you were saying, there's actual studies that show that itching is contagious. So watching somebody scratch will make a person scratch.
Starting point is 00:08:02 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, you know, 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, right?
Starting point is 00:08:34 We want to get irritants off of the body and that's in part why we scratch. So, you know, in the itch-scratch cycle, if you scratch and itch, it releases histamine to that site and histamine makes you itch more. Is there any logic behind that? Yes. So, histamine is an amazing chemical that does many, many, many things in our body, and it's part of our immune response.
Starting point is 00:08:59 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.
Starting point is 00:09:31 Similarly, we didn't really understand, science did not 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. So you're not supposed to scratch an itch because it can release histamine and amplify the itch instead of quieting it. But the doctor who's called the godfather of itch, Gil Yastapovich, you say he doesn't even suggest to patients that they shouldn't scratch their itch because if you're seeing him, you have pretty severe chronic itch
Starting point is 00:10:06 So why did he explain to you why he doesn't even suggest it? I think the patients that he often sees and he does a lot of things he you know studies Studies itch as a as a doctor who does medical research, and I believe that he also sees patients I've talked to other dermatologists who have told me not to itch, who've, you know, tried to hand me cold packs and tried to get my hands off of my body and explained the itch-scratch cycle and sort of said, okay, we might not be able to treat your underlying itch, but at least we can break the itch-scratch cycle and stop that kind of secondary itch that's coming on top of it. And when I talk to him, he sees people that are so miserable
Starting point is 00:10:44 and they know, they know that scratching is not going to help them. But at some point, it's reflexive. And I think that he felt like it was cruel to tell people to stop doing this thing that is deeply irresistible and often the only source of relief that you might be getting even if it's leading to a problem down the road. So short of having like a nice ice cold bath for somebody to sit in, telling somebody with no other answers at that moment to stop scratching themselves might feel a little bit rude.
Starting point is 00:11:11 But I would say that all of the dermatologists I've ever seen have been very, very sympathetic. And itch is something that they deal with on a daily basis. It's enormously common. And they mean well. I'm certainly not trying to get on dermatologist case for that. So before we get deeper into what scientists are learning about the neural pathways of
Starting point is 00:11:32 itch and how itch is different from pain, I would like you to describe the chronic progressive illness that you have that's responsible for the severe itch that you experience. Absolutely. So I have a poorly understood degenerative disease called primary biliary cholangitis. It's autoimmune in nature. It seems to be partially genetically, you know, you perhaps have a genetic predisposition, but then perhaps environmentally triggered. They don't really know why people get it. Right now I believe that it's roughly 80,000 people in the United States total who have it. About nine in 10 of those people are women, and the disease is most common in adult women,
Starting point is 00:12:14 somewhat 40 and older. And it is a disease in which the body mistakenly attacks some of the cells in your bile ducts, in the lining of your bile ducts. It causes them to inflame. It hurts your liver's ability to secrete bile into your digestive system, into your body. And ultimately, if the disease is allowed to progress, will slowly progress towards cirrhosis. Disease used to be considered or was often considered fatal. They found a drug, actually a really old drug
Starting point is 00:12:51 that dissolves gallstones works really well to slow its progression. And so, yeah, so that's the condition that I had. I was diagnosed with it during my second pregnancy, though I clearly had it in my first. And I was young, although not unheard of young to get it. And my OB-GYNs had never had a patient with it. It took a while to get to a hepatologist who recognized it. But it, like a lot of liver and kidney conditions for reasons that are not understood at all, causes really, really bad itching that does not respond to antihistamines
Starting point is 00:13:24 and does not respond to steroids. Annie, before we talk more about you and your condition and your itch, because there's so much more to talk about, I want to talk about what scientists are learning. I was told a long time ago by a dermatologist that itch is kind of a mild form of pain, that it travels the same neural circuitry, but you know, it's just a variation of pain. That apparently is not true. Scientists have kind of overturned that theory. So what do we know about how itch travels down different pathways than pain does? What are scientists learning?
Starting point is 00:14:05 down different pathways than pain does. What are scientists learning? We know a lot more, and we have a pretty clear map of itching that is an allergic response, a histamine response. So the kind of itching that probably comes from trying a new laundry detergent that doesn't agree with you or getting a bug bite, something like that, sometimes called histaminergic itch. And it's basically that histamine is firing up these nerve circuits, goes to the brain, brain senses itch, and then you scratch. That's a very, very over, probably oversimplified explanation. Scientists did not know until recently what was happening with itch that didn't involve
Starting point is 00:14:46 histamine. They understood that you could itch completely independent of histamine, but what chemicals and what nerves were involved in that? It's really only like 20 years ago that they began to get a good sense of it. And that was about the same time that they really began to see that itching was a sensation distinct of pain in the sense that there are nerve circuits that only work with itch in the skin. That said, and I'm going to caveat this because every scientist I talked to caveated it too,
Starting point is 00:15:14 that these pathways within our body, it's not like a car traveling from destination B to destination A on a road, right? It is like trying to describe a city full of traffic. There are many, many pathways. They're enormously complicated. They interrupt or intensify or turn down one another. And so pain and itch are still pretty tightly linked in the body, and lots of painful things will ping itch receptors. Itch receptors will ping pain receptors. So we don't want to cleanly say that these are two different things. But there are itch circuits that are just for itch. And we found those, we sort of nearly found them in the late 90s. We really found them in the aughts is the sense that I got from
Starting point is 00:15:59 scientists. Does that help lead to an understanding of what kinds of drugs might help the kind of chronic itch that isn't caused by histamine? So you know taking Benadryl or Claridin or any anti-histamine isn't really going to help people who have that kind of non-histamine itch. So if we understand what is happening in the body with these forms of itch, we can then go in and find ways to disrupt it. All different spots along those routes that we understand are being caught in that traffic
Starting point is 00:16:35 snarl, it gives scientists a way to try to develop drugs or treatments that interrupt it. And so the biggest advance that has been made recently are these kind of immune modulating drugs that block certain cytokines, which are proteins in the body that help that inflammatory process. And there was... Help increase the inflammatory or decrease the inflammatory response? Yeah. So they increase the inflammatory response and they turn out to make the body more sensitive to itch.
Starting point is 00:17:08 And scientists found some drugs that block two of them. And this drug works really, really well with a kind of interesting panoply of conditions with asthma, with psoriasis, with issues that you might have with like your nasal passages even. They're finding that possibly it could help with kind of chronic heart and lung problems also when there's inflammation. And it just smothers itch really, really well in people with certain forms of eczema. There's now a bunch of these sort of similar types of drugs, and scientists are finding more and more of these drugs that are affecting cytokines and these cytokine pathways in the body and are turning down these itch dials. Can you give the names of some of the drugs that fit the category you were just describing?
Starting point is 00:18:02 One of the big ones, the first one that came out is a drug called Dupixent, which is used commonly to treat asthma and atopic dermatitis, which is a form of eczema. It's a really common condition and can be absolutely miserable for folks. And it was really hard to treat the itching in that condition for a lot of people. And it turns out that Dupixent works great. And there's now a number of similar drugs. They often, if you look at the name, they end in UMAB, right? Like Dupixent is Dupilumab, and these are the umabs. And these are biologic drugs that are helping modulate the body's immune response and affecting these cytokines. And there's a number of them. But research scientists are noting that now they know so much more about the circuits
Starting point is 00:18:55 that are involved in chronic itch, that there's a lot of drugs in the pipeline, a lot of studies that they're trying to do that are affecting other parts of these circuits and might really help people in the coming years. And so, Gail Yasipovich, I was corresponding with him after the article came out, and he indicated that there might be drugs for liver-related itch in a few years, whereas right now there's really not a lot to offer people with that kind of itching So I want to ask you right now We're talking about itch but you're having to really use your brain to speak it with a sense of humor and clarity
Starting point is 00:19:38 About the science of itch your personal experiences with it Is it making is this interview making you itch more or is it distracting you from actually? experiencing itch because, or is it distracting you from actually experiencing itch because what you're doing is describing it in a personal history way and in a more scientific way? I am so engaged that I'm less itchy than when I was nervous and just walked in the door to the studio. So I appreciate that, I really do. And there's all of these other things that
Starting point is 00:20:05 modulate, right? Like anxiety increases itch, sweating increases itch. It really is a complicated, complicated phenomenon to experience. Well let's take a short break here and then we'll talk some more. If you're just joining us, my guest is Annie Lowry. She's a staff writer at The Atlantic, where her article, Why People Itch and How to Stop It is published. We'll be right back after a short break. I'm Terri Gross, and this is Fresh Air. If you listen on the regular to the Fresh Air podcast, then I know you'll love some
Starting point is 00:20:38 of the other NPR podcasts, too. Here's why NPR Plus is worth your time and money. You get perks like sponsor-free listening, bonus episodes, early access, shop discounts, and more for over 20 different NPR podcasts like this one. Support what you love and stop hearing promos like this one at plus.npr.org. This is Fresh Air. I'm Teri Gross. Let's get back to my interview with Annie Lowry about her Atlantic Magazine article, Why People Itch and How to Stop It. She's a staff writer at the magazine. The article is about what researchers
Starting point is 00:21:16 are learning about the causes of chronic itch and Lowry suffers from severe and chronic itch resulting from a rare liver disease. She writes about that too. You know, you write that the brain can hallucinate itch into being. Can you describe what that means? Absolutely. Why do we feel anything, right? I think that there is this sense that the body is kind of like a computer or, you know, a machine which is taking inputs and then creating outputs and you can have some some problems within, you know, the
Starting point is 00:21:52 machine-like system that is processing from input to output. But the truth is that all of our sensory experiences are coming from an enormous interplay of external stimuli going through this impossibly complicated computer that is hallucinating reality in every moment before us, right? We don't actually see anything. We don't actually feel anything. This is all coming through this system that is generating the hallucination of experience. And I get that that sounds kind of moony and out there, but it's actually really, really true.
Starting point is 00:22:32 I didn't include it in the piece, but one thing I talk to a lot of doctors about is, you know how you can have itching and pain in limbs that don't exist anymore, right? If you've had an amputation of a foot or a hand you you can still feel things in it It's real. It's called phantom pain. Exactly. It's real. It's just not true, right? And and that's the brain That's just the brain doing its its job Perhaps not in a in a perfect way, but but you know, the only way that we sense anything is is through our brain So do you try to train your brain to not focus on itch or not experience itch? I say that half facetiously, but I also say that as a form of like, you know, meditation
Starting point is 00:23:11 or mindfulness or those kinds of things. Yeah, there's these interesting studies that show that meditating on pain reduces the sensation of pain for some people, at least. So I know for people who are experiencing childbirth, they'll have you repeat these mantras, right? Like, I'm in pain, but that's my body doing its job. I'm in pain, but that's my body trying to keep me safe, and I'm safe. I'm in pain, but it's all right, and I'm not always going to be in pain.
Starting point is 00:23:44 And that can actually really reduce the sensation of pain, sitting in pain and accepting it. And I don't want to say that that's universal, and I don't know what it feels like to be in anybody else's body but my own. If you meditate on itch, it just makes it worse. It makes it so much worse. And I've had people be like, well, can you be kind of zen about it? And I'm like, no, you need to ignore it. You need to say that it's not happening. You need to like attack and override. You need to use all of these other different strategies. Screaming, maybe screaming would help. I don't I don't know that the zen path works very well with itching. I remember once I when I was in my phase of trying to figure out anything that might stop it, I went to acupuncture.
Starting point is 00:24:27 Because for some forms of itching, acupuncture has been shown to really help. And I was just curled up on my side with all of these like little tiny needles in my ear and on my spine trying to alleviate this itch. And it was making me so itchy to not move. And I ended up like breaking a bunch of them. I like oh god am I gonna stab myself and it ended up being fine but yeah itching I you know movement helps ice helps ignoring it really helps not thinking about it precisely because thinking about being itchy or scratching makes you itchy and makes you want to scratch. You write that scientists are thinking that it is sometimes a disease in and of itself.
Starting point is 00:25:12 What is meant by that? 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, instead of being something where if you fix the underlying issue you might fix the itch, itch itself can kind of rewire the body and can be treated as a condition unto itself. And a lot of dermatologists see itch that way.
Starting point is 00:25:55 It's often a symptom, often a side effect, but sometimes it's really its own thing in the body. We spoke a little bit earlier about new medications that are being used to treat itch and some of these are off-label uses. Have you found anything that's helpful to you? We're going to start trialing different drugs to see if they affect my itching. And that's in part because doctors have been trying to figure out the appropriate set of drugs to treat my underlying disease. So I turn out to not respond very well to that one
Starting point is 00:26:33 drug that has really changed the course of PBC treatment. So they have me on second line drugs that seem to be working well and they will monitor me very closely in the same way that they do monitor all PBC patients. Because they know that the disease tends to be fairly slowly progressing, but that doesn't tell you anything about whether your disease will progress slowly. And so they want to watch that in me because I was diagnosed relatively early in life with it. And the other thing is that I, like a lot of folks with issues with autoimmune diseases, ended up with a second autoimmune disease.
Starting point is 00:27:05 So as an adult, I developed type 1 diabetes. And they're kind of watching and seeing if I develop other autoimmune conditions. So I'm very, very, very likely at some point to develop something called Sjogren's, which affects among other things the tear ducts in your eyes. And so they've been watching. They're like, okay, are you diagnosable with other things? Do we think that the autoimmune process within your body has kind of slowed down and stopped? And I had some frustrating conversations with my doctors where they'd kind of be like, okay,
Starting point is 00:27:33 let's keep on doing more blood work, let's do biopsies, let's do tests, let's talk about improvements that we can see in these hard and fast numbers. And I would say, okay, but can we talk about my symptoms? Like I'm not sleeping very well and the itching isn't as bad now as it has been. And one of the sort of spooky things about it, and I'm very grateful for this, but I will be not itchy at all for long periods
Starting point is 00:27:56 and then it'll just come back out of nowhere. And I don't really understand the trigger or what happens. In the spring, this was true for about six weeks. It's been true on and off since I published this piece, I think just because I'm thinking about itching so much. So finally, one of my doctors was like, yeah, OK, let's focus on the itching. And there's a bunch of different treatment options
Starting point is 00:28:16 that they have. And none of them work that well. And none of them work for everybody. So you have all these PBC patients who are kind of doing this grab bag approach to, okay, like, let's try this, let's try that. And even the drugs they're suggesting are just like kind of wildly different things. So one of the things that they will trial is analog of a drug that's used to reverse heroin overdoses. It's a medication that blocks opiates
Starting point is 00:28:42 in the body. Another is an SSRI, which are commonly used to treat depression. There's a antibiotic that seems to work for some people's itching. I don't understand why that is. And I think that this kind of scattershot, ragtag approach reflects the fact that they just don't really understand what's happening in terms of itching with people with my condition. So they're kind of guessing at what might interrupt it and some things happen to interrupt it and other things don't. But maybe as they understand it better they'll come up with better treatment options. Well we need to take another short break here so let me reintroduce you. If you're just joining us my guest is Annie Lowry and
Starting point is 00:29:20 we're talking about her Atlantic magazine article, Why People Itch and How to Stop It. We'll be right back. This is Fresh Air. This is Fresh Air. Let's get back to my interview with Annie Lowry about her Atlantic magazine article, Why People Itch and How to Stop It. She's a staff writer at the magazine. The article is about what researchers are learning about the causes of chronic itch. Lowry suffers from severe and chronic itch, resulting from a rare liver disease. What was your first reaction to getting the diagnosis that you had a rare liver disease that was not only causing your chronic and unbearable itch, but it could be untreatable and it could even be fatal.
Starting point is 00:30:06 In some sense, I was thrilled to get an answer for something that had been going on for so long. So I never got a diagnosis after my first pregnancy. One of my doctors had suggested that the itching was psychologic in nature and that I was just really stressed out. And I had never had problems with itching before. I had occasionally gotten itchy when I had bug bites or something, but I wasn't a person who was an itchy person.
Starting point is 00:30:31 I didn't have, you know, childhood eczema or any of those conditions. So I was thrilled to finally get a diagnosis, and they trialed this drug, ursidiol, which has really changed PBC treatment in me. And it was only a year or 18 months later that they kind of said, look, like, you know, your organs don't seem to be responding in the way that we would love for them to respond, that we're seeing in your blood works, we're going to try additional medications. And that was actually the moment that I got a little bit spooked, because they didn't quite say to me, look, there's only one treatment and the treatment doesn't work on you. It was kind of, you know, oh, well, we'll try other things. We'll try other things.
Starting point is 00:31:15 We don't know the course of your disease. And I think that it was meaningful for me personally to find out that I was sick while I was having my kids and certainly I don't think you need to have children to feel part of the tremendous fabric of humanity at all but at least for me it did really remind me of that certainly reminded me of my own mortality and I also think that you know I was in a place where I was really accepting of the fact that I was getting older and moving into a different phase of life. And all of us, if we have the good luck to live for a long time, are going to have our
Starting point is 00:31:51 bodies fail us. And maybe it's actually nice for me to know the way in which my body seems to be sensitive. And I try not to be dire about it because I continue to be really healthy. The itching is annoying. The chronic fatigue is annoying, the chronic fatigue is annoying, the type 1 diabetes is deeply annoying, but it is very manageable. But I'm still enjoying really good health a lot of the time
Starting point is 00:32:12 and science is advancing, and I try to remember that. And in the piece, part of the story was talking about the struggle of just coming to terms with the fact that you might be uncomfortable for a really long time. You are in a body, and hopefully you will live long enough for it to fail you. And 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?
Starting point is 00:32:36 Because I'd be really revving myself up about it and didn't feel good about it and didn't feel like I had a psychologically satisfying answer. And both of them were kind of like, you put up with it, stop worrying about it, and get on with your life. And they said it in a much nicer way than that. Both of them were people of faith, and they were like, I praise God and I move on, and I keep on focusing on the good things in my life. I think they were totally correct. It was such a nice jolt of an answer, just not to get stuck. It keeps you trapped in these loops, and I
Starting point is 00:33:05 think I was mentally trapped in this loop. And sometimes it's like, okay, just get out of it for right now. Go do something else. Life continues on. You have a body. It's okay. You point out that if you're in pain, there's so many pain clinics and pain medications and pain experts and pain support groups. If chronic severe itch is one of your problems, you can see a dermatologist but there aren't a lot of centers that specialize in itch and you couldn't even find a lot of support groups that deal with itch. And I think a lot of people have issues with itch. Why do you think, not as many as pain, but why do you think so little attention
Starting point is 00:33:45 is being paid to itch and why comparatively little research has been done about itch when compared to pain? It's a great question. And I think that the answer is multilayered. So one is that doctors didn't understand itch, even just that basic histaminergic itch, very well until recently. There's not a lot of drugs to treat itch, and there didn't seem to be a lot of money in treating itch. There's a lot of money in treating pain, right? An upsetting amount of money that has led to a tremendous social crisis
Starting point is 00:34:26 due to our treatment of pain. But it is also true that there's a lot of chronic pain, and we have a lot of ways to treat it. And I think there's now a lot more emphasis on non-opiate medications to treat pain, while also acknowledging that a lot of people require appropriately opiate medications to treat pain. So it just wasn't a lot of optionality for treating itch.
Starting point is 00:34:47 It wasn't the sort of thing that medical centers were going to make a lot of money by treating people with chronic itch because they didn't have options to give them. I also think that there's a social aspect. 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 to people who are going through it. And itching, you kind of sound like a muppet, right? Do you think that like itching, it's just a little bit like disrespected. You look like a dog with
Starting point is 00:35:19 fleas. It's like embarrassing to scratch yourself in public. It's inappropriate to scratch yourself in public. I think inappropriate to scratch yourself in public. I think people just kind of don't take it very seriously. I'd also thought a lot about how like, you know, 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
Starting point is 00:35:39 by being in the simple presence of people who were itchy. So I don't know, but it's something that, you know, people suffer through alone. It's kind of embarrassing. But it's something that people suffer through alone. It's kind of embarrassing. And it's been so nice since the piece came out to get, I got a lot of emails from people suggesting lotion. And I was like, okay, thank you. Thank you for that.
Starting point is 00:35:55 But then I got a lot of emails from people who were like, people don't believe me, but I've been itchy and they don't know what it is and I feel so alone. Or I have this cancer and it makes me itchy and it drives me completely nuts. And so it's really nice to get responses from people who didn't want to be alone and do have some trouble conveying to folks just how hard it can be. And this is not to, you know, there's no misery Olympics here.
Starting point is 00:36:17 I'm not saying like pain is awful, itching is awful. It's just that sometimes I think itch is not respected. Your husband made a t-shirt for you. Describe what was written on the t-shirt. It says, yes, I have tried lotions. So people, when you say that you're itchy, I think they kindly assume it's a dermatologic thing and they're like, oh yeah, I was itchy too and I tried this lotion and you should try this lotion. And I try not to get short with those people because they are trying to be helpful. But I'm like, I'm not saying I've tried everything, but I've tried a lot of things. Like, I'm an expert in my own itch at this point.
Starting point is 00:36:52 And if Usarin fixed it, I can assure you that I wouldn't be experiencing it. But people are trying to be nice. And so I try to be nice back. I don't know that I succeed at that all the time. Do you ever enter into a conversation with somebody and you're itching really badly and you're not gonna say anything about it and you think, if the person I'm talking to
Starting point is 00:37:14 only knew what's going on inside, this conversation might be very different. Yeah, I try not to talk to people when that happens. I guess in some ways it's nice that usually when I'm really itchy, it's at night, like in the middle of the night, because, you know, during the daytime it would be pretty unusual for me to be severely itchy now. That was not true when I was pregnant so much, but now it's like the sun starts to go down,
Starting point is 00:37:36 I'm leaving the office so I can go hide in my house if I'm itchy. You know, so for the past week that I've been itchy, it's mostly, it's been at night. And like, I just excuse myself because it's just like, sometimes I'll subtly try to like scratch my head or scratch my feet or something, but it's noticeable. People kind of pick up on it. It's like not a cool thing to do socially. I think it leads to a sense of disquiet in the person that you're talking to and then they opt up scratching themselves. You've just, you've allowed your itch to a sense of disquiet in the person that you're talking to and then they have to scratching themselves
Starting point is 00:38:05 You've just you've allowed your itch to become contagious My guest is Annie Lowry. We're talking about her Atlantic magazine article why people itch and how to stop it We'll talk more after a break. This is fresh air This is fresh air Let's get back to my interview with Annie Lowry about her Atlantic magazine article, Why People Itch and How to Stop It. It's about what researchers are learning about the causes of chronic itch. Lowry suffers from severe and chronic itch resulting from a rare liver disease. You describe how touch can aggravate your itch. So sometimes when you're in bed with your
Starting point is 00:38:46 husband you will create like a barrier of pillows between you so he doesn't accidentally like reach out and touch you in the middle of the night. Which he's not doing intentionally. Right, right. But yeah, you know, and I'll get woken up and so the itching is much more intense at night which tends to be very often I won't itch during the day and it'll only be at night, especially in the middle of the night when it shows up.
Starting point is 00:39:11 And it turns out that that is a hormonal thing. So there are a number of your body hormones, including estrogen, that affect your propensity for itch. And so you have a hormonal cycle during the day, and that's why you itch more at night. So sometimes, yeah, he'll accidentally nudge me. Or we have two dogs, one of our dogs skulks around. Patricia likes to get up and sleep on the bed with me,
Starting point is 00:39:37 and she'll do the same thing. She'll wake me up. And I'll wake up, and I'll be itchy. And I'll just be absolutely furious if the itch-trash cycle starts because then it's hard to get back to sleep and you're taking like melatonin or you know hydroxazine or one of these drugs and so yeah touch can be completely unbearable if you're itchy because it just instead of setting off those receptors for pleasure or warmth or pressure, it just sets, you know, your receptors for itch off.
Starting point is 00:40:07 You described that when somebody is scratching, people will move away because of the fear that it might be some kind of infestation. It might be lice, it might be scabies, or God forbid bed bugs. But when you're in pain, people will sometimes do the opposite, that they'll move closer, maybe because they want to help or show their sympathy. Can you talk about that a little bit and talk about how you've experienced that personally? Absolutely.
Starting point is 00:40:37 If you saw somebody scratching themselves on the subway, would you go sit next to them? No, of course not. Of course you wouldn't do that. Just instinctively I think you have that self-preservation mechanism. I've actually noticed it with my kids who are little too, right? Like if they cry, if they get owies, it's this deeply instinctual thing to go run up and like scoop up the body and make sure that it's okay. And I think that you see that even among adults, right?
Starting point is 00:41:06 A crying person, they're sort of a magnet, right? Like, are you okay? Do you need a tissue? Do you need a hug? Do I know you well enough to give you a hug? I would love to give you a hug. But you don't feel that way when people are scratching. It's a really deep thing.
Starting point is 00:41:20 Don't get scabies. Don't get bedbugs. Don't get ticks on you. Whatever is going on with them. And I think it's again, it's like a deeply elemental thing. I don't think that people are trying to be cruel. I think there's something deeply hardwired in there, right? Like don't approach the mangy dog
Starting point is 00:41:37 that looks like it has fleas all over it. You know, don't approach the human that's compulsively scratching themselves, which you know, is socially coded in the same way that compulsively scratching themselves, which is socially coded in the same way that chewing with your mouth open is. It's not something that is an attractive thing to do. Your article ends with this, I'm here, my body tells me. I'm here, I'm alive, I'm dying, I'm here. It sounds like a meditation. Is this something that you repeat to yourself a lot?
Starting point is 00:42:10 I often sort of tell it to shut up. I'm often like, I know, I know I'm itchy, you can stop it, I know. I don't need to itch, I don't need to be scratching. I don't know why it's happening, but it could stop and we'd be fine. There's no point to my itch. I don't need to be scratching. I don't know why it's happening, but it could stop and we'd be fine. There's no point to my itching. It's not helping me get something off of my skin. It's just interrupting. And I do think that even if I can't quite come to terms with the itch, I have come to much better terms of just, you know, the gift of
Starting point is 00:42:39 being in a body that is getting sick, the gift of being in a body at all. And I have really tried over, you know, the kind of six months that I was working on the piece to come to better terms with that. And again, I think so many people come to better terms with that. And I always want to be careful to note, like, it's, you know, 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
Starting point is 00:43:13 to have it. What kind of insight? Oh just like you can endure a lot. Your body is going to fail you. You know 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, you know, taking the right lesson away from it. I really often just try to be like,
Starting point is 00:43:43 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. So before we go, should we apologize to our listeners for making them itch in case we've done that? I'm so sorry.
Starting point is 00:44:02 Yeah. Especially the people who are always that? I'm so sorry. Especially the people who are always itchy. I'm really sorry. I hope you turned this off the second you heard it. You're like, nope, not me, not today. I'm going to make the counterargument. I think this is very helpful to anyone who has itch. I hope so.
Starting point is 00:44:18 I hope so. And it is all of us. All of us. Yeah, it's not as common as chronic pain, but chronic itch is really common. and everybody is itchy at some point. Eny Lowry, thank you so much for talking with us. This interview has really been a pleasure, even though we've been talking about chronic itch and rare disease.
Starting point is 00:44:37 You've brought a sense of understanding and a sense of humor to it all, and I greatly appreciate that. Thank you so much for having me. Eny Lowry is a staff writer at The Atlantic. We've been talking about her article, Why People Itch and How to Stop It. Tomorrow on Fresh Air, Donald Trump said if elected he would quickly settle the war in Ukraine, impose high tariffs on imports, and work to end the war in Gaza. We'll talk with Zannie Minton-Bettos, editor-in-chief of The Economist, about what to expect from the new administration
Starting point is 00:45:09 and what foreign leaders are thinking. I hope you'll join us. To keep up with what's on the show and get highlights of our interviews, follow us on Instagram at NPR Fresh Air's executive producer is Danny Miller. Our technical director is Aubrey Bentham. Our engineer is Adam Stanaszewski. Our interviews and reviews are produced and edited by Phyllis Myers, Ann-Marie Boudinotto,
Starting point is 00:45:43 Sam Brigger, Lauren Krenzel, Theresa Madden, Monique Nazareth, Daya Challener, Sussan Jakundi, and Anna Bauman. Our digital media producers are Molly C. Vinesper and Sabrina Seaworth. Roberta Shorrock directs the show. Our co-host is Tanya Mosley. I'm Terri Gross.

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