Chronic illness can come with seemingly endless doctor’s visits, treatment trials and insurance battles. On top of that, people with chronic conditions often experience some degree of shame or blame for their condition – from their social circles, healthcare providers or themselves. Unfortunately, the resulting emotional distress may aggravate physical symptoms. One of the sisters in Alexandra Tanner’s novel “Worry” experiences this distress due to chronic hives that are hard to hide, hard to treat, and come with flare-ups that are impossible to predict. Alexandra and Mayo Clinic expert Dr. Rohit Divekar help us understand what it’s like to live with this kind of condition, remove the blame and offer hope for relief. This episode was made possible by the generous support of Ken Stevens.
Chronic illness can come with seemingly endless doctor’s visits, treatment trials and insurance battles. On top of that, people with chronic conditions often experience some degree of shame or blame for their condition – from their social circles, healthcare providers or themselves. Unfortunately, the resulting emotional distress may aggravate physical symptoms. One of the sisters in Alexandra Tanner’s novel “Worry” experiences this distress due to chronic hives that are hard to hide, hard to treat, and come with flare-ups that are impossible to predict. Alexandra and Mayo Clinic expert Dr. Rohit Divekar help us understand what it’s like to live with this kind of condition, remove the blame and offer hope for relief.
This episode was made possible by the generous support of Ken Stevens.
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Dr. Denise Millstine:Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. In the same way that books can transport us to a different time, place, or culture, “Read. Talk. Grow.” demonstrates how they can also give us a new appreciation for health experiences. Books can provide understanding of health topics and provide a platform from which health can be discussed.
At “Read. Talk. Grow.,” we use books to learn about health conditions in the hopes that we can all lead happier, healthier lives. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine. I am always reading and I love discussing books with my patients, my friends, my professional colleagues, and now with you.
I'm so excited about our book today “Worry” by Alexandra Tanner. And our topic today might be a surprise for our listeners, it will be urticaria, or that's better known as hives. Our guests today include Alexandra Tanner. Alex is a writer and editor based in Brooklyn, New York. Her work appears in Granta, The New York Times Book Review, The Baffler, and “Jewish Currents,” among other outlets. She's a graduate of the MFA program at The New School and a recipient of grants and fellowships from MacDowell, The Center for Fiction and Spruceton Inn’s artist residency. Her first novel is “Worry.”
Alex, welcome to the show.
Alexandra Tanner: Hi, thanks so much for having me.
Dr. Denise Millstine: Our second guest is Dr. Rohit Divekar. He's an allergist, immunologist and internist and chair of Practice and the Division of Allergic Diseases at Mayo Clinic in Rochester, Minnesota. He received his medical degree from the University of Mumbai and his doctorate in microbiology and immunology from the University of Missouri, Columbia. His areas of focus include hay fever, inflammation, rhinitis, asthma attack, chronic hives and chronic sinusitis. Rohit, welcome to the show.
Dr. Rohit Divekar: Thank you. This is such a pleasure to be on the show. Thank you.
Dr. Denise Millstine: The novel “Worry” is a modern novel that's really a sister story. Jules is living in New York City, working as a fact checker and editor for a literature study guide company when her sister Poppy comes to stay, allegedly temporarily, with plans to look for a job and get her own place. The opening line sets the stage for our conversation today. “My sister Poppy arrived on a wet Thursday dressed ugly and covered in hives.”
Alex, tell our listeners a little bit about Jules and Poppy.
Alexandra Tanner: Oh my God, Jules and Poppy are kind of both train wrecks in their own really unique ways. Jules is highly neurotic and really perturbed by the state of the world, but has no way of doing anything about it, and just gets really stuck in these thought loops in her own head. She can't quite figure out who she is or what she wants out of life, out of a career, out of her relationships with her family. And she's just kind of killing time going through it. I know she sounds like a peach.
And Poppy, Poppy is her mirror and her foil and is passionate and optimistic and unconcerned with being corny or what people think about her. And she's much more resilient than Jules in a lot of ways. She suffers with chronic health issues, mental health issues. When the novel starts, she's in this process of picking herself back up again after a few really rough years and sort of fighting through it. And that's where they start. And then their trajectories kind of cross one another throughout the book. So you sort of think Poppy is the one who's struggling, and Jules is the one who's just kind of maintaining. And that trajectory really reverses as they spend a year together.
Dr. Denise Millstine: It's so authentic and real because very few people have linear lives and trajectories, so I really appreciated that about them.
Dr. Rohit Divekar: It's so interesting. It looks like both of them are dealing with personal stress in their own different ways. And this kind of makes sense because, the hives as a manifestation often tends to be a reflection of that internal tussle, the inability to find that balance, that harmony, and a lot of these chronic urticaria are a reflection of that. So many times we'll see patients who have something going on with their lives that leads them to perseverate or stress, or have something that is unresolved, and that can then manifest in some of these physical symptoms, like urticaria.
Dr. Denise Millstine: I was curious if this was the first time you encountered hives portrayed so clearly as part of the story in a novel?
Dr. Rohit Divekar: Indeed.
Dr. Denise Millstine: It's interesting when we look at YA novels, for example, we never see or not never, but we rarely see acne, which clearly many people of that age experience acne. And I thought hives being such a common condition. It's interesting. I had never paused to think how I hadn't seen it in a character. It's not the main part about Poppy, of course, but it's almost a barometer for her, for where she is, or how Jules can appreciate where she is. Will you tell us a little bit more about chronic hives, how common it is? What the experience is like?
Dr. Rohit Divekar: Yeah. So hives are actually, as a diagnosis, extremely common, more common varieties, acute hives, which are hives that sort of come and go within a short frame of time. The definition for chronic hives is hives that last for longer than six weeks. And we want to make that distinction from the get-go, because there are very distinct sort of pattern pathologic mechanisms that drive one versus the other.
In situations where acute hives are diagnosed, there is a small proportion, those hives are actually a response to an external trigger. So it could be an infection. It could be an allergen. It could be something they came in contact with. But it's a temporary exposure that once you remove yourself or it goes away, the hives tend to resolve. And I think everybody has had at least one episode of hives in their lifetime, and it's usually the acute hives.
The problem comes on when the hives stay. It's like an unwelcome guest that does not leave. That then becomes this constant source of distress, which in turn feeds into the stress level of the patient that can further drive some of these mechanisms. And I think I read a research paper somewhere that describes the amount of physical discomfort. And, and it's almost like one of the most painful conditions a person can have, because not only is it extremely disruptive to your daily life in your awake periods, but it is also extremely disruptive to your sleep at nighttime. So you never get that respite. You never get that relief that you are seeking. It's a constant struggle that is wearing you down.
So it's a very distressing condition, and I'm really glad we are having this conversation, because there is a lot of people who kind of suffer through it and not realizing there is actually good treatments that are available, things we can actually do to manage their symptoms better, and mostly to recognize that when hives last for as long as months or years when people have them that long, it is rarely an allergy to something. It's usually an internal problem manifesting on the skin as hives.
So I think that information itself in many ways is cathartic, because then the person stops blaming themselves for breaking out. So what did I do? Was it the banana I ate? Was it my dog? Was it my husband? Was it my spouse? So that takes away that personal responsibility which is misattributed by them to themselves. And it's such a relief because then they are not blaming themselves for what is happening to them. So I'm really glad we are having this conversation.
Alexandra Tanner: It's really emotional for me to hear you describe the condition this way, because I am sort of a normal sufferer of nervous, anxious hives or like contact dermatitis, you know, when I encounter…when I handle cardboard for some reason I always break out in hives. But my younger sibling struggled with chronic hives, debilitating chronic hives for several years. And the story of their hives is that classic combination of exposure to an allergen; they were living in a home that had black mold in the basement, but they were also at a top tier university, facing a lot of academic pressure and social pressure, and dealing with unhappiness and confusion about a lot of different areas in their lives.
And I was speaking to my sibling this week, telling them that I was about to appear on the podcast, and they were sort of reliving the like, month that the hives began and they were like, I had this nightmare, I was lying in bed and I thought, things are so bad on the inside that if anyone could see it on the outside, it would be a horror show. And that, unfortunately, is why so many chronic illnesses I think are underdiscussed, undertreated. That patients still feel they have a responsibility in causing the condition because there was a physical trigger. But there is also this huge feedback loop, as you're saying, we're going to bed worrying, am I going to wake up with hives, waking up with hives, and then going, oh my God, it's another day where I'm covered in hives.
Dr. Rohit Divekar: Yeah, yeah, no. And the thing is that a lot of people have allergies, right? People have ragweed, dog mold, allergies, but not everybody who has chronic allergies has chronic hives. Another interesting connection is that people who have chronic hives, they can actually flare up in those situations where they're exposed to those allergens because it's like you're adding another layer of inflammation to a preexisting condition that is in some ways inflammatory in nature.
So we often get stories about people saying that “I was doing okay on medications. Then I came down with the flu or a cold or, there was this huge ragweed bloom in the field next to me and then I was exposed to that and I broke out.” So those are situations where the allergen typically tends not to be the driver of the reason why hives happen, but it becomes a reason for the flare up of why one could lose control or become worse from where they are. So that's a very good point that you make in her story.
Dr. Denise Millstine: It's part of the mystery too, right? Because if you know that there's a trigger and then you avoid the trigger, and then a month later you have a flare, but, you know, you avoided your trigger, it becomes really difficult in the sense of…We see Poppy really expressing that she wakes up kind of checking in. What's today going to be like? Is this normal people hives, no hives, enough hives that I have to stay home from work? And I really appreciate that insight into her thought process with that and how unpredictable illness is really so stressful and I don't think we give that enough.
Dr. Rohit Divekar: That randomness often drives people to desperation, where they are constantly trying to find a pattern when there is none. And then very often these patients will have a list of 15, 20, 25 things that they feel that they have reacted to. But it's because it's not really their reaction to those things, it just happened that they broke out at a time when those exposures were there.
So this is a real problem, because now you can imagine a youngster who is now avoiding numerous foods. Their diet is going to be very poor because they're restricting themselves to maybe just, rice and boiled chicken because there's nothing as they want to eat because they feel like they're going to break out. Or we have an adult who really needs to be on medications, but now they have a list of 25 meds that they think they had reactions to antibiotics, blood pressure, medications, medications for their psychiatric health. And you can imagine how difficult it could get to manage somebody like this, because that barrier, you can't overcome it because that fear of, oh, I'm going to break out. So I think there is a lot of element of education, counseling. There's a lot of providing the insight, offering tools for them to understand the process itself that goes into managing urticaria.
Alexandra Tanner: Again. It's just such a relief. I feel like when this was happening in my family's life, there was so much almost shame about the emotional component and the fact that it was uncontrollable. That you can go through a list of foods and medications and root things out, but that might not be the solution. And that the emotional component of chronic illness is, and the emotional component of mental illness, too, is I'm relieved that there's a new way of talking about it just in the last 10 years.
Dr. Rohit Divekar: Yeah, I think at least on my own personal practice, I like to look at hives in terms of domains. So you have hives as a disease domain itself. So we want to deal with that. But we also want to deal with the domain of sleep, because sleep is such a critical component of our health and it is often very poor in people who have hives.
Then we talk about the domain of mental health because the hives can drive anxiety, depression, and then those emotions, those feelings can drive for control of hives. And then we have the domain of weight, because a lot of time the stress will cause people to gain weight. Some of the medications we have people on will cause them to gain weight. Many times people use steroids, corticosteroids that are prescribed. It's not first line therapy, but a lot of them do end up getting multiple rounds of steroids, that can cause them to gain weight.
And all of these domains are sort of mini engines that will keep driving this problem, feeding into the central domain of hives. And it'll keep going on and on and on these little (unclear) that keep driving the disease. So until you recognize that it goes beyond just the skin, I think it would be hard to just manage it by just, you know, throwing meds (at it). But we have to recognize the burden of it all and then sort of take care of it all. Then to provide the most relief that we can.
Alexandra Tanner: Yeah. And there's a lot of that in the book that the side effects of Poppy's medication, that she has gained a lot of weight and Jules kind of like has this very surface level, cruel sense of pity for her; like, this is taking a toll on your body and Poppy's sleeping all the time. She can't wake up when her alarm goes off because she's on five different antihistamines a day and it just sort of, you know, colonizes your life a little bit.
Dr. Rohit Divekar: Yeah, so this is like a rock and a hard place and I'll tell you why. So if you don't take enough antihistamines, you're not going to sleep well because you're going to be itchy. You're going to wake up itching. If you take too many, you're going to be sleeping a lot. But that sleep is not really restorative. It's not the kind of sleep that your brain really needs to have the rest and the break that it requires.
So there is this dichotomy where you have to have the right amount either way you swing, it's not going to be good for the patient. So it's a very tight rope these patients often have to walk. And that poses another challenge for them to manage on top of everything that's going on with them. So that's a very important sort of point that people need to recognize that it's not as easy as, “Take this and you'll be fine.” Sometimes it requires a constant titration, personalization, depending on symptom control. And all of that comes from recognition that this is something I can work with. You know, once we give that up, once we empower the patient to make those decisions, they can choose the level of treatment they need to be on based on their symptoms. So I think that's something that people need to know, otherwise it becomes very hard managing all of these different aspects.
Dr. Denise Millstine: Well in something we see with Poppy, as you mentioned, Alex at the beginning, she has serious mental health issues that need treatment and these medications will often interact with other medications. So for many people with chronic hives, that is not the only health issue that they navigate and so there's this interaction.
I want to go back a few comments ago and talk about the steroids particularly. Because, Alex, I think you brilliantly have Jules describe Poppy when she's on steroids as being sort of heart attack-y. And it's a great descriptor for what can happen when people are on corticosteroids, the most common of which is going to be prednisone.
Rohit, can you talk about what that experience is like and then re-emphasize what you said, that this probably shouldn't be an ongoing chronic treatment strategy?
Dr. Rohit Divekar: Correct. I like to tell my patients that steroids are like the little red glass box on the wall; you only break it in case of fire, right? So it's like you only would use steroids if there is really nothing else that we can do at that particular point in time. The problem with steroids is that they work, they work very well. So that's a problem because when they don't work, that's when the rebound happens. When you go off of it, then you might feel like I need more.
And the second big issue is that the side effects of steroids are cumulative. You take a dose or course today, that's adding to the list of side effects. Then you take another course in a month, that's going to add to the effect that you had today. So if you add in your lifetime or in the number of years the person has hives, who does a number of prednisone courses, that actually is going to have a fairly bad outcome in the long run because as steroids has, Denise, you know, steroids can cause glaucoma, cataracts, hypertension, high blood pressure, glucose issues, they can cause thinning of the skin, bruising, bone thinning, fractures. So there is a laundry list of problems that steroids can cause.
And not just physical, steroids also cause a lot of psychological side effects: anxiety, tremors, sleep issues. You can get psychosis from steroids. I've had patients who had such a flurry of thought or had such a pressure of speech from being on high dose-steroids, and it was all steroid induced. So these are not drugs that have a big safety window. And we want to be very careful about using them because there are non-steroid alternatives that we should be focusing on to manage hives and only use steroids in the case where there is really nothing else that we can do, maybe for a short term, we can certainly consider.
Dr. Denise Millstine: Well, interestingly, you used the red box on the wall, only break glass in setting of emergency with the steroids. But also that's the EpiPen. And Alex, you comment twice, at least in the book, about ability to access EpiPens and their costs. Can you comment on that portion?
Alexandra Tanner: Absolutely. I mean, I couldn't believe when I heard how much an EpiPen costs and that it's an absolute lifesaving tool. That's just, I don't know the numbers on that these days, but it's exorbitant. The fact that so much of the treatment for these really specialized things that, you know, steroids are kind of, they are the red glass, but they're kind of the most accessible treatment. Am I wrong in saying that? Because watching my sibling, you know, they had to go drive 45 minutes to a special university dispensary to get Xolair injections and they were on Dapsone, which is like a leprosy drug that changed their blood oxygen levels and that so many of the treatments for hives had these enormous, not just health barriers that they impact your health all the way around, but financial barriers.
And Poppy at one point, she doesn't have an EpiPen. She's like, oh my God, I just can't, I couldn't pay for it. I don't want to be controlled by having to have the EpiPen. And it's that tension between I know what I need to do for my body. I know that I need to have the safeguard. And yet it's almost like she has authority issues and is furious at the state of medicine and insurance and all of these other roadblocks.
Dr. Rohit Divekar: Yeah, the reassuring thing is that for most chronic hives patients, you do not need to give an EpiPen unless, you know, extremely severe cases where there has been a history of throat swelling or swelling inside that could compromise breathing.
So for the most part, and you bring up a good point of omalizumab, which is the biologic that is approved by the FDA for treating chronic hives. That, in my mind, has been a godsend for a lot of people because up until that point, 2013 was the study that came up in New England Journal of Medicine that showed efficacy of omalizumab to treat patients who are refractory to high dose antihistamines. And, that showed a very remarkable dose dependent effect, where those people who had tried the high dose antihistamines that were taking, cetirizine, fexofenadine, loratadine, were common antihistamines four times a day. Some might even have been on other medications. In spite of that, if they were breaking out, they were put into these four categories. One was placebo 75, 150, and 300mg. And they found that the 150 and 300 did quite well. The hives came down, the itching came down. And that kind of led to the approval of this medication.
Which essentially, in my mind, offered an option, because up until that point, we were really stuck to either doing the antihistamines, H1, H2, or maybe montelukast, which is a leukoene inhibitor. And if that didn't work, then we skipped right over to the last category, which was immunosuppressant immunomodulators, which is chemo-type medications. And that group is pretty dangerous. It has a very narrow window of safety. You have to constantly monitor for, you know, side effects. Dapsone falls under that immunomodulator group. But yes, it is a leprosy medication and it acts by calming down the immune system, but it also comes with a bunch of side effects and there are others in that category.
So that really that middle path was not available for a while and now that space is actually growing because, there is a recognition that we need more therapeutics. We need better therapeutics that can manage some of these extremely difficult, recalcitrant, difficult to manage hives and we'll start to see a lot more products in that area come up in a few years. So that's a very good promise.
Dr. Denise Millstine: We don't want to age you, Rohit, but this has been a game changer in your career, no doubt.
There's also a scene where Poppy and Jules are sitting on the sofa and Poppy's just changed her diet to a plant-based diet, and Jules noticed that she smells really badly. And in a moment of being a little bit cruel to her sister or a lot cruel to her sister, she comments on that and Poppy storms off and showers and says, it's not my diet. It's because I'm using a new medicated lotion.
Alex, I don't know if you knew which medication you were thinking of. Or Rohit, I don't know if you knew. I was thinking it might be one of the topical natural products that we use in integrative medicine not indicated for hives, something like Neem or something. But was it something specific you were you had in mind?
Alexandra Tanner: I honestly did not have anything specific. I just know that there's a lot of different, because there is like a dermatological component, sort of the same way that it's trial and error with which course of medication and medical treatment works, which lotion is going to be the least offensive to my body. But that might be sort of a very strong smelling thick, thick cream.
Dr. Denise Millstine: Rohit, did you think, oh, here's another person putting this on their skin, or you just sort of chuckled.
Dr. Rohit Divekar: No, no, no, that's actually not unusual. Because what happens is a lot of people think it is on the skin, therefore I have to apply something on the skin to make it better. And I have had examples where people are applying, Benadryl cream or diphenhydramine, which is, you know, anti-itch cream. They'll just apply loads and loads of it or they will apply calamine or something soothing.
Now, these may work in a very temporary fashion because either they act by locally making the skin not itch, but they really don't take away the reason for why you're breaking out. And that's again going back to your immune system in these tissues that is producing histamine locally, causing you to break out into welts. And that histamine is also then activating the nerve endings that causes that sensation of itch that then you perceive as a hive. Because hive is basically a wheel and itch.
So until we block the histamine and some of the related chemicals, or we calm the cells down for them to stop making those compounds, these hives are really not going to respond much to topical therapies. Topical therapies can work temporarily, but I think the focus is mostly from within. Again, there are many reasons for why people can break out, but they are all from within.
Now, one thing that we do need to clarify when we see patients is there is a minor subset of patients who have chronic hives. And these hives are actually some of the more dangerous kinds of hives because they are associated with inflammatory disorders that are more of the autoimmune type. So we want to have that second distinction. The first distinction was acute versus chronic. And the second distinction was, is this idiopathic urticariaor is this secondary urticaria? Secondary urticaria is usually secondary to some other disease state. So it could be chronic infection, could be chronic inflammation from another autoimmune process. So basically diagnoses that can have lasting impact on the length or lifespan of the patient. So not all chronic hives are benign. Some of them can be ones that require more than just antihistamines.
Dr. Denise Millstine: And let me just highlight a couple of phrases that you used there. So you were distinguishing between secondary meaning caused by another disease or you said idiopathic, which is essentially hives for hives sake. They're not related to another underlying solution. And when you refer to a condition as benign, what it really indicates, at least medically speaking, is this is not a condition that will cause your health harm, but doesn't really comment to the extent of how challenging the condition can be, as we've said at the beginning.
Dr. Rohit Divekar: Absolutely, absolutely. So the understanding is that when I use the word benign, it actually is reassuring the patient that this is not going to shorten their lifespan by 40 years, by 30 years or something dramatic. It is a nuisance. So idiopathic hives or spontaneous hives are a nuisance. But chronic secondary hives are driven by another disease process that has the potential to shorten your lifespan. So I think that's where I use the word benign, mostly to reassure the patients that that don't be scared. Don't be, don't be afraid. This is something we can manage. We can take care of it.
Dr. Denise Millstine: Yeah, but it's still important and we have strategies. I want to backtrack, Alex, to something you said earlier in the show about the shame that comes with hives. I saw in Poppy a couple of ways this manifests, both in terms of if I did something to provoke the hives to come out. And then there's another portion where the quote is, “If she scratches too much, the hives will bleed, become infected, refuse to heal her body is a log of all the times she couldn't be good and patient and just wait for the swelling to go down.” There's that implied: if she gives in to scratching, it was that she wasn't being good. Can you just reflect on that a bit as well?
Alexandra Tanner: Yeah, I think that for patients with something that is so visible on their skin and all they tell you is don't scratch, don't scratch. But how could you not? I mean, you're talking Rohit, about patients who wake up in the middle of the night unable to stop itching because it's so intense, it pulls them out of sleep. And there's something about having a condition that is so legible to the world, that when you go out, if you're not wearing long sleeves, people will see, oh my God, there's something on that person's skin. You just sort of become like alienated, I think, and especially for women. Poppy's a young girl and she wants to be cute, and she doesn't want to have to cover up, and she doesn't want to have this sort of gross thing that telegraphs to the world something about her. And I think that's again, where the emotional cycle comes in. I can't physically restrain myself from responding to this, but then I'm responsible for making it worse and for making the way I appear to the world even more significantly different.
Dr. Rohit Divekar: Yeah, this is one of those conditions that has a high burden of outward consequences, because you are what people see you, until they talk to you, right? They're going to look at you. And then people can be judgmental. They can be like, what's happening with this person? What's so what's wrong with them with their skin looking like that?
So that is that outward consequence of having a condition that really is not their doing, And then their inward consequences, all those emotions, the feelings, the guilt that comes with, why is this happening to me? What did I do about it? Why are these treatments not working? So it's a very emotionally heavy disease to take care of. And, somewhere in that shuffle, that component can get lost. And you know, it's very important for people who go through it or people who are around them and even physicians, providers, to acknowledge that burden that goes with it. So it's not just a skin condition, it's a skin condition with all these things that follow.
Alexandra Tanner: And it depends so much on the medical team that you have. I think when you don't have a great team and the answers kind of run out. There is something that I've seen happen to my sibling where then the onus is placed back on the patient. Well, this must be something you're doing because we've run the course of what we can throw it at this. And that is devastating for a patient because, you know, that's the horrible thing where two things can be true, that there is this huge terrain of emotion and psychology that shows up on our bodies. How could it not? And the directive to sort of regain control and, you know, fix whatever is going on internally. It's a huge burden for the patient.
Dr. Rohit Divekar: Absolutely. Yeah. That's always a challenge because ultimately the onus of doing those things, taking your meds, eating right, sleeping well, it is all directed at the person. Not only are they suffering, now it's their responsibility to do those things to make their suffering less. So it's really one of those conditions that I feel like a lot of times my patients will actually will cry, you know, because they are so emotionally invested in this. But at the end of it, they are like, now I understand this so much better. I feel like I'm empowered to take care of this, knowing what is actually happening to me. And I think that is key here, because many times people go through this not knowing why it is happening.
We don't have answers, like science does not have all answers. But we have enough answers to a lot of questions that people have, saying these are the cells that are implicated. This is why you're breaking out, your itching because of the histamine acting on the nerve endings. And the science behind it provides that insight. Otherwise which you're suffering without knowing, but now are suffering with the knowing. And that makes that suffering meaningful, because you can work towards relieving that suffering. So that's kind of the approach I think is going to be the best approach to take care of some of these complex conditions.
Alexandra Tanner: And I think there's so much. I just wanted to go back a little bit to like being a good patient and wanting so badly to be the best patient you can be. And I think for someone like Poppy, who's dealt with so many chronic issues and so many mental health issues, being a good patient, at a certain point it just becomes this like, well, it's not doing anything.
So why, why bother being a good patient and following the advice and reaching that point of not being able to tolerate a plan of treatment or sort of wanting to rebel against a plan of treatment and have your own life back again. I think that's a huge part of what’s motivating Poppy throughout the book.
Dr. Denise Millstine: Yeah, I think we see that trajectory not uncommonly. And then to your point earlier, Alex, there, you can be the best patient in the world when you're able to consciously make your choices. But if you have itching while you're sleeping, you really can't be blamed for scratching when you're not fully conscious and that is obviously our natural response to this.
And it really, I think, is important to talk about these common topics, because you had mentioned Rohit, that when people will see somebody with a flare of hives, they might immediately react to them in a sort of what's wrong with you? But in the book, we actually see Poppy sitting with her college friends, and she's covered herself even though it's warm, but she's in long sleeves and in the book she talks often about, like, at least it's not on my face, right? Because you can cover most of the rest of your body if you need to. But you see the friends who care about her even react. What is that? What's going on with you? Because she's decided that she had to keep it hidden for so long and Rohit, I love that we've had this conversation, because now I'm hoping people who either have hives or who know somebody who has hives, which is probably everybody listening, will recognize that it's not the person's fault. It's not indicative of something irresponsible that they did or a bad choice that they made. It's something that's coming from the inside of their system and it's very, very complex.
It's been such a ride with these two sisters. I want to mention to our listeners that the book is not entirely about hives. It's a sister story. There's a lot that happens in the book, but listeners are going to have to read it themselves to get the whole trajectory of this year together for these two sisters and learn even more about the experience of hives.
I want to thank you both for being on “Read. Talk. Grow.”
Alexandra Tanner: Thank you so much. This was a really beautiful, great, fascinating conversation. I feel lucky.
Dr. Rohit Divekar: No thank you. I really enjoyed having a conversation about this topic. Thank you.
Dr. Denise Millstine: “Read. Talk. Grow.” is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
Visit our show notes to see the books discussed today and for links to other health education materials. Follow us on social media like Instagram and Facebook, or reach out directly to our email readtalkgrow@mayo.edu with suggestions for books or topic ideas. We'd love to hear from you.
This podcast is for informational purposes only and is not designed to replace a physician's medical assessment and judgment. Information presented should not be relied on as medical advice. Please contact a health care professional for medical assistance if needed for questions pertaining to your own health. Keep reading everyone!