Caroline Crampton: Overcoming Health Anxiety
"I became an unreliable narrator of my own body."
🎧 31 min | Episode 14 | Jun 6, 2024
Caroline Crampton
Overcoming Health Anxiety
At 22, writer and podcaster Caroline Crampton was cured of her second round of Hodgkin lymphoma, with doctors giving her the green light to live her life without worries about it returning.
"But I am not free," she writes in her beautiful memoir and history of hypochondria, A Body Made of Glass. The emotional toll of her cancer left her perceiving symptoms and scanning herself for signs of illness. Caroline had lost trust in her body. "I became an unreliable narrator of my own body", she writes.
As unsettling as that may seem, she was not alone. In her book, Caroline traces the fascinating evolution of hypochondria, from the medieval belief in fragile glass organs to Freud's interpretation of its psychological origins. She looks at how Proust, Darwin, and Austen explored the subject in their writings and considers the contemporary phenomenon of cyberchondria.
In today's era of abundant online information, at a time when the global wellness industry has become big business and medical information is at our fingertips, is it a wonder people question the reliability of their bodies?
Listen Now
Apple Podcasts • Spotify • Amazon Music • Substack • YouTube
Transcript
(Edited slightly for clarity)
Melissa Ceria: Caroline Crampton, welcome.
Caroline Crampton: Thank you very much for having me.
Melissa Ceria: Caroline, you've written a fascinating book that merges your personal experiences with a history of hypochondria. I think this work is brave because you are exploring something that makes you feel vulnerable. What was it like for you to tackle this subject?
Caroline Crampton: So, it took a long time for me to decide I wanted to make it a personal story. In a way. I thought about it for a long time. I actually write a bit in the book about my previous resistance to writing at all in the first person, about illness, because I was so worried, I think, that someone would work me out, that people would know what I was worried about if I did that. Having then decided I wanted to write about it, I found it oddly easy, actually. I was expecting it to be very difficult to write those sections. And it did, you know, come with some, some emotions resurfaced and so on. But the actual writing was very straightforward. The sections in the book that are personal are pretty much as they were in that first draft. They just came out that way, and that felt good in a way that felt like I'd made the right decision. If it wasn't difficult to do, I think, it meant I was ready.
-
Melissa Ceria [00:02:25] You were first diagnosed with your cancer at 17 and then at 18 again. At what age did your hypochondria kick in?
Caroline Crampton [00:02:41] I would say about 24 or 25, so 2 or 3 years post full all-clear. I'd say for that initial period, my sort of bodily vigilance and so on was, as you would expect, for someone who's just had cancer. That's always going to be different to someone who's never had an illness of that degree, but all of my anxieties were very much within what you might call normal range. And they were also, crucially, all connected to symptoms and things to do with the illness that I just had. So the part of the definition of hypochondria, or health anxiety, as some medical professionals choose to call it now, is that it's not justified or warranted that this anxiety seems to come out of nowhere, that it's quite irrational. And so, I think, to start with you could absolutely see why I would have the anxieties that I did. It took 2 or 3 years for them to grow beyond those boundaries, as it were, and become connected to things that had nothing to do with the fact that I'd originally had this serious illness. And that was, I think, the point at which, that you could say I tipped over into being a hypochondriac rather than just a vigilant former patient.
Melissa Ceria [00:03:50] And did it limit itself to symptoms tied to your cancer or other forms of illness?
Caroline Crampton [00:03:58] Oh, other forms of illness. All kinds of things. I went through this long medical investigation, I think, I write about a bit in the book about having this, what I thought of as sparkly eyes, where you get clouded vision with very bright lights, as if you're staring straight into a floodlight or something. But it just happens at random all the time, and it can be associated with migraines. Some people who get migraines also get it's called aura. Technically, I didn't have any of the other symptoms associated with migraines. I just had this sparkly eye thing and yes, went through lots and lots of different routes trying to get a kind of medical explanation for that, or that it was a brain tumor, the sign that I was going to have a stroke, all kinds of things, which no one had ever mentioned this in connection with Hodgkin's lymphoma before, because it has nothing to do with it.
Melissa Ceria [00:04:44] You know, one of the remarkable things about this book is that I didn't realize that hypochondria has such a rich history, and it offers insights into how our medical and cultural attitudes have changed over time. And it's interesting that this condition has been diagnosed in different parts of our body over the course of history. Can you briefly describe how it started, I think in the abdomen, and then eventually found itself migrating to the mind?
Caroline Crampton [00:05:18] Yes. So to start with, the hypochondrium was just a name for a part of the body, the upper abdomen, where your stomach and your liver is. And that was an anatomical term used in ancient Greek by Hippocrates, Fifth Century BC. So a very old word. Hypochondria was just therefore the word for diseases or sensations arising from the hypochondrium. Very simple and descriptive. And then it stayed that way for about 1500 years as the dominant theory of medicine in Europe and the West was something called humoral theory. Crucially, the black bile humor was thought to be produced in the liver, so part of the hypochondrium and an excess of black bile was thought to produce a condition called melancholy, quite close to what we would today call depression and anxiety, but which also had a lot of physical symptoms around bad digestion and pain and discomfort and fatigue. And so the term hypochondria got very associated with melancholy and black bile because of this sort of geographical alliance in the body. Then humoral theory starts to decline at the beginning of the enlightenment and better understanding of anatomy and science. But that association between the term hypochondria and these particular sets of symptoms and associations remains. So for about 150 years, in the sort of late 17th, 18th, early 19th century, hypochondria is in flux. It's both this specific bodily complaint about this particular part of your body, but it also comes to describe the mental state of being uncertain about one's health, of imagining symptoms that doctors of the time can't pinpoint. And then that transition is completed and the bodily aspect is completely swept away, because we now understand much more about the body. Science has disproved humoral theory. We don't care about black bile anymore, but the word hypochondria remains connected with these now mental health conditions. One of the things I find really funny about it is, in that period of transition, hypochondria became kind of fashionable and people started abbreviating the word. So you find it, for instance, in Lord Byron's diaries, he talks about being hipish today and what he means hip being just the very first syllable of hypochondria. What he means by that is sort of a bit out of sorts. He's got maybe a bit of a digestive pain, and it's giving him a kind of depression about his health, and that's called being hipish.
Melissa Ceria [00:07:49] That's so interesting. And in the 19th century, it is seen as a condition that's tied to the nervous system, as you describe and, and often associated with intellectuals or the elite. And is that because it was thought that they had time to think about this, or was it also tied to other factors?
Caroline Crampton [00:08:08] It was definitely thought to be a condition of leisure, that only people who had the space and time and resources in their life to really think about their state of health, to really contemplate it, would experience it. Then it undergoes a kind of class transition in the late 18th, early 19th century when ordinary people, laborers, working class people start turning up at hospitals with similarly hard-to-explain symptoms. And then, this is where you get one of many contradictory, paradoxical things about hypochondria, because on the one hand, you've got theorists saying hypochondria is such a refined and elevated malady. It's only of the upper classes than the intellectuals who have the sort of mental power to even understand something like this. And then, on the other hand, you've got doctors and hospitals, treating fishermen and builders and all sorts of people, saying this is a problem of malnutrition, and of overwork and overexertion. So which is it? Is it you're not doing enough or is it you're doing too much? It seems to be somehow both and neither. And this is definitely a theme that I came across a lot when I was studying this, that just contradiction is rife, it's everywhere.
Melissa Ceria [00:09:23] And what was your interpretation or what were your thoughts when you were able to consider those two versions?
Caroline Crampton [00:09:32] That I think you could have anxiety in lots of different situations. I don't think it can necessarily be generalized in that way. You know, I think we even now, we have the cultural assumption that people who live very privileged lives can't possibly also have mental health conditions. But, practically we know that, that's not the case. You can be the richest person in the world and still experience depression, and vice versa. I think it's not at all beyond the realms of possibility that someone without any material advantages, can still be anxious about their health. Just because they've got a lot of else on their mind doesn't mean they can't also think about this. So I think it was a mistake to try and generalize anxiety in that way, but given that at the time they tried to explain everything by looking at it through the lens of class and wealth, it's not that surprising.
Melissa Ceria [00:10:19] When you were researching this book, did some of these writers and figures that you researched provide you with comfort?
Caroline Crampton [00:10:30] I think they all did, in a way, just because it is reassuring if in a somewhat dark way, to know that other people have been there before you. I think illness generally, and hypochondria in particular, can be a very isolating experience because it's all down to your subjective sensations, especially when it's, you know, not something that can be externally perceived, that it's all happening inside. And so recognizing some of your own experiences in an account from somebody else, whether it's, you know, just something you encounter on social media or the diary of a writer who lived hundreds of years ago, there's immense reassurance in that to know that you're not alone, you're not weird, you're not an anomaly. I think, specifically though, I found it quite energizing in a way, to read about all the different things that these other hypochondriacs had tried. So, Charles Darwin, for instance, was very invested in what was then called the water cure, which, it was a complicated regime, I think, of German in origin, which involved drinking vast quantities of cold water and also bathing in a lot of cold water at very specific intervals during the day. And I find it so interesting, the extent to which a lot of these things that other people tried can now be quite easily compared with modern wellness trends.
Melissa Ceria [00:11:52] That's absolutely right.
Caroline Crampton [00:11:58] That we are still trying things like this current trend for, sort of ice plunges feels very similar to, you know, the water cures of centuries past. And so I take a lot of reassurance and energy from that, actually, just that, you know, we are humans and we have hypochondria and we try things and nothing much changes.
Melissa Ceria [00:12:14] There are so many sort of interesting themes that you explore in your book, and one of them is the importance of narration of stories. And you write, "When I experience an episode of severe anxiety about my health, I become an unreliable narrator of my own body." I'm wondering how important are the stories that we tell ourselves?
Caroline Crampton [00:12:37] I think they're everything. I don't know that we really exist without, without them. And something that the process of writing about mine, I think, made me understand better, is that absolutely everything is a story and a subjective narrative. Just because somebody thinks it isn't doesn't make it not so. So I think that can be a useful thing to remember if you're, say, in a medical situation and you're being told something is an absolute truth that you know, is not perhaps an absolute truth, it can be useful to think about, well, where is that story coming from? Where is that particular perspective in that bias coming from? And I think about it all the time now when this urge to narrativize that we all have, that hypochondria is really just a way of trying to make sense of disparate sensations and symptoms, and it's often very focused on trying to find an underlying cause for it. So it can't just be the case that I feel tired. I have a headache. My stomach hurts. There can't be prosaic different explanations for each of those things to do with I didn't sleep very well. I've been looking at a screen for too long. I haven't eaten enough vegetables. There has to be a unifying story behind it all. There has to be something that explains everything. And again, I think this is just, I've come to realize, I think, it's just part of the human condition. I think that is how we are, is we, we always look for a bigger story, even if perhaps there isn't one.
Melissa Ceria [00:14:08] And also that we're capable of being both subjective and objective in how we interpret stories.
Caroline Crampton [00:14:17] Yes, definitely. I think that speaks to a general idea, still very pervasive idea in some quarters that the hypochondriac is fundamentally unreliable, that this stigma that because someone maintains that they experience illnesses, that a doctor cannot find an organic cause for, they therefore must be untrustworthy in other parts of their life, or that they are irrational or cannot be relied upon. And I don't think that's true. And I think that it's, it's interesting, distressing, but an interesting phenomenon to think about and to perhaps apply, well, what other sort of traits or collections of characteristics do we subconsciously apply that same thing to? What else do we see about someone and then automatically pick them as not to be believed? I think it was very interesting when I was looking to the book to look into the data that exists about, you know, how pain is perceived in different types of people and how pain is taken more seriously in white people, in men, as opposed to women, non-white people, etc. Even something that we can to an extent measure objectively is still perceived very differently depending on who is reporting it. Yes, I think, I think that was, that was very interesting to me. It's a grim topic, but I, I enjoyed puzzling it out a bit.
Melissa Ceria [00:15:44] Well, I think you're tackling really important stigmas in our culture as well. And this idea that somebody who may express a feeling is an unreliable narrator is problematic.
Caroline Crampton [00:15:53] Yes, it definitely is. And I, I think it's to do with the way that we perceive medicine, actually, at least in part, I think other prejudices intersect with it for very practical reasons. We have always had to think of science in general, medicine in particular, as a settled thing. I think if we didn't consider that the current version of medicine is the final answer, we would find it very difficult to ever take any treatment. Because why would you take the treatment now when next week it could be better? So we have to believe that it's, it's the final version, when in fact, of course it's anything but. I got to see this very close up because it just so happens by coincidence the doctor that was treating me for my cancer had, had the same cancer when he was about the same age, and so he was able to tell me all about the treatment that he had received and how it was so much worse than what he was going to give me. And then what's been really interesting recently is that I've been hearing from people who have had the same cancer more recently, and their treatment is totally different again, because science has moved on yet again. It's much better. It’s, the side effects are less pronounced, great improvements have been made, and will still be made. So I think the way medicine is taught, though, because it has to be, is that it is settled and final and we've puzzled it out, and you, the potential doctor, are going to deliver this wonderful science to people. Because if you, if you injected the appropriate amount of uncertainty into it, I don't know if anyone could bear to be a doctor. If they could bear to say, "Well, we're going to do this to you, and we think it's good, but we don't know, and maybe tomorrow we'll know better." I don't think anyone will be able to care for people in that way. So I do think that some of that bias comes from the rigidity of mindset that is sort of necessary in order to do it, but can then also be harmful when taken too far.
Melissa Ceria [00:17:49] Right. And what I think you're also saying is that medicine is, is perceived as this empirical truth, and that what revolves around that maybe is more negotiable.
Caroline Crampton [00:18:00] Definitely, yes. And I think if you, you know, look into things like, which conditions receive the most funding for research and things like that, we would like to think that we just put money where it's needed. No, we put money where it's needed by the people with the greatest privilege, or where there is the most money to be made by pharmaceutical companies or whatever, whatever. A hundred different subjective and sort of profit motives all intersect around this, and therefore what we perceive as being perhaps, objective science and unbiased, is in fact the product of many, many, many overlapping things. But to a large part, we have to believe that, that's not the case in order to just operate as a society.
Melissa Ceria [00:18:53] I do want to underscore that there are qualities tied to hypochondria, and you explore some of these in the writers that you look at, a sensitivity, a closeness to the world around them. Can you talk a little bit about that so that it, it doesn't feel like it's all, you know, weaknesses?
Caroline Crampton [00:19:12] Yes. So I think for a long time, hypochondria was associated with, classified under something called sensibility, which particularly in the 17th, 18th, 19th century, the era of romantic poetry and so on, sensibility was considered to be a very good thing. It was to be in touch with your feelings and your emotions, and to be very sensitive to the emotions of others. And I think hypochondria gained that association because it does require a level of self-awareness. And this is what's so interesting, I think, about hypochondria as opposed to some other anxiety disorders, that some people are fully in it to the point that they cannot countenance any suggestion that what they're experiencing might not be real. But some people aren't, that they can they can joke about it, or they can say, well, you know, I'm probably being a hypochondriac, but I am very worried that I've got xyz. And that level of self-awareness and the imagination necessary to come up with the story that explains what they're feeling – those were, and I think sometimes still are seen as very positive traits. And there is this persistent association between hypochondria and creativity, this suggestion that there's a reason why so many writers and artists and so on have experienced it. I, I'm a little unsure about that, because I think there might be a certain effect in operation where those are just the people that we remember, whose writings we preserve and whose diaries we study, as opposed to your ordinary folk not necessarily publishing great novels or painting great works, but it does seem to be a very comprehensive effect. It recurs over and over and over again that it is people writing great plays and so on that are the ones who are also experiencing this. So it is easy to see then how there could be this association between the imagination required to do that and the imagination, albeit in a slightly more twisted form, required to invent illnesses for yourself.
Melissa Ceria [00:21:15] You talk a little bit about the therapies that can help people through hypochondria and to address those narratives. Can you briefly talk about what you felt was most effective?
Caroline Crampton [00:21:32] Yes. So in the UK, they recommend cognitive behavioral therapy for health anxiety. And then in addition to that, I did something called EMDR, which is Eye Movement Desensitization and Reprocessing, I think is what the acronym stands for, which is a therapy that was popularized by the book, "The Body Keeps the Score," and has been used a lot in the treatment of PTSD for military veterans and people in traumatic situations like that. And my therapist used it to sort of help put behind me some of the medical memories that were recurring and causing me problems. And it's a, it's a kind of contested therapy. There is, a lot of people swear by it. There is also, it's quite difficult to capture evidence of why it's working for those who say it works for them. So jury's still out on whether it's a science or a pseudoscience, but what it essentially involves is trying to move memories, recollections that are bringing the trauma into everyday life, into a new situation. So in my case, you know, memories of bad medical procedures and diagnoses and other horrible things that are involved in having cancer coming up every time I encounter any similar medical situation, even if it's nothing as serious, and coloring my life in that way. Moving those memories from to the present tense and then moving them to the past tense. So you can still think about them, you can still remember that they happened, but they aren't there in the present moment every single second coloring how you think about things. And the way this is done is with what they call bilateral stimulation. So this can either be with a light that moves a light bar, so you follow it with your eyes. Or some therapists, I think, like to use tapping where you're tapping on either side of your body. And then the therapist guides you through a, a talking therapy program that recalls the memory and then in conjunction with this bilateral stimulation, eventually moves it into the past for you. And I found it very helpful. I know all the caveats, and I even was thinking about them while I was doing it. I was like watching this light. I was thinking, "Am I being hypnotized? Is this a bit like hypnotism? I don't know how I feel about this", but I can't, I can't deny that it, was it was very helpful and it did what it set out to do. So, so yeah, those are the two things together that I've done.
Melissa Ceria [00:23:54] It sounds like it alleviated the triggers for you.
Caroline Crampton [00:23:57] Yes, that's a good way of putting it. And I've also sort of made my peace with it. And, you know, other things that other people describe as being helpful. I think largely if it works for you, then that's good. I don't think it necessarily has to be more complicated than that.
Melissa Ceria [00:24:13] I agree with you. You come to the realization in your book that hypochondria is, and I quote, "an ancient condition that remakes itself anew for every age". And to that end, you recently wrote a piece for Time magazine about cyberchondria. Can you describe it? And do you think that this is the next iteration of hypochondria?
Caroline Crampton [00:24:39] So hypochondria, I think, has just updated itself as medicine has improved. You can see that in the conditions that people fear that they have. You know, in the 19th century, people were afraid they had tuberculosis. In the 20th, they were afraid they had cancer. In the late 20th century, they were afraid they had AIDS. You know, as this sort of medical zeitgeist moves on, hypochondria changes to incorporate that. And yes, so the internet has been very important in hypochondria's latest iteration. Partly because of the greater availability of information and anecdotal data that it provides for hypochondriacs. And then also for this effect, which is, I think, kind of what's being described in the word cyberchondria, the idea that not only can people access this greater information, but the information can actually infect them in a way that you can actually contract an illness through greater exposure to information about it online. And so that's where you get crossover incidents like, what was going on in 2020-2021, where there was a lot of concern that young people, particularly young girls, were catching tic-like behaviors more commonly associated with Tourette Syndrome from watching creators on TikTok who exhibit these behaviors. The idea that just watching it happen was enough for them to get it and start doing it themselves. And you see that in a lot of different examples where people are just being repeatedly exposed to scary health information, they then incorporate that into their own story about their health.
Melissa Ceria [00:26:18] It almost sounds that when we search for these symptoms online, we are allowing the search engine to become the narrator.
Caroline Crampton [00:26:29] Yeah, I think that's something that I certainly didn't understand as well until I researched it properly, is that I think we think of, things like Google as being a neutral platform, that it just exists to convey information to us in relation to our search terms. But no, it's a for-profit company with its own interests and agenda, and its primary interest is keeping you using Google for as long as possible, therefore making it so that you keep searching, you type new things, you keep searching, you fall down what we might call a kind of rabbit hole around a particular subject that keeps you on Google for longer, seeing ads and using their service and providing them data about how you're using that service. And so it's in their interests to return search results that will keep you there and keep you doing it. And I think it's been pretty well established over the decade and more that Google's been operating, and other search engines too, that what keeps people searching is alarming information. Say you've got a headache that you've had longer than you feel like a headache should linger and you search, "How long should I have a headache for? Or why do I have a headache for three days?"
Melissa Ceria [00:27:34] Not a good idea.
Caroline Crampton [00:27:38] Not a good idea to do. I should say don't do that. But if you do, do it, if you got a search result that said something like you're probably stressed, you might go, "Oh yeah, you're right, I am. And I should stop reading about it on the internet." But that's likely not the result you'll be returned. You'll probably get a load of results around people who were then diagnosed with brain tumors, and it all started with them having a headache forever or people who had strokes or really serious and mostly pretty unlikely conditions.
Melissa Ceria [00:28:06] And highly alarming.
Caroline Crampton [00:28:08] Highly alarming. Those will be the results that you'll see first, rather than the more sensible, boring stuff about did you drink any water? You know, how long did you spend on your phone yesterday? That kind of thing. So understanding that it's not, it's actually not the same as going and looking in a book, that it is a living, changing entity, the internet, and it doesn't have your best interests at heart. I think that can be an important step to recovering from cyberchondria.
Melissa Ceria [00:28:39] Caroline, how has writing this book changed you?
Caroline Crampton [00:28:46] In two very important aspects, I think. One, it has given me a much greater sense of the sheer wonder of the human body. I think, really immersing myself in all of the ways that it can go wrong has given me a great appreciation of all the ways in which it can be right. And just, when you really break down the sort of mind-body connection and you really think about how I am just this collection of cells that walks around the world and, my cells can keep secrets from themselves, and they can have differing agendas and all this kind of thing. Yeah. It really gave me quite a sense of awe at the majesty of it all. And then the other thing was, it gave me a much greater sense of my own mortality in a way that is something that comes up in cognitive behavioral therapy for health anxiety is this idea that you will die at some point. So this is why hypochondria is not an entirely baseless kind of anxiety. Sometimes anxiety takes forms, that, of things that are extremely unlikely, but you will eventually die, and therefore it's not completely without reason to be so concerned about, you know, things going wrong with your body. But I think having a greater awareness of that and sort of inviting that truth in can, in my case, at least, it can help combat those intrusive thoughts. Because if you think, well, if I'm going to die eventually anyway, do I want to spend my finite time worrying about whether my fingers look weird today or whatever the particular thing that you're concerned about today. Maybe they do, maybe they don't. Maybe it doesn't matter that much in the end. So yeah, I'm not sure that I would necessarily recommend spending five years immersed in hypochondria as a sort of treatment for it, but I would definitely recommend a greater connection with one's mortality as a way of gaining a good perspective.
Melissa Ceria [00:30:49] Caroline, thank you so much for your time for this beautiful work. A very honest and open story about hypochondria and its place in our medical and cultural history. I wish you all the best and I look forward to other people reading this wonderful book.
Caroline Crampton [00:31:01] Thank you. Thank you very much for having me.
Explore More
Website: Caroline Crampton
Instagram: @cacrampton
More on what we create from loss of health
Kathy Giusti
A Roadmap to Recovery
🎧 36 min | Episode 13 | May 30, 2024
Kathy Giusti was diagnosed with multiple myeloma in 1996 at age 37 and given a three-year life expectancy. Undeterred, Kathy founded the Multiple Myeloma Research Foundation, which helped save her life and countless others. Today, Kathy empowers patients with vital knowledge about cancer research, treatment, and survivorship.