Hypochondria and cyberchondria: the many ways to worry about health

Redefining hypochondria as health anxiety

0:00ABC Listen. Podcasts, radio, news, music and more.

0:30ABC Listen. You don't have long. Vote now at abc.net.au slash top 100 books.

0:39In popular culture, hypochondriacs are really dismissed.

0:44They're like conceived as attention seeking, stupid or ridiculous for the things that they worry about.

0:53Kind of butt of jokes, but they don't take their problems seriously or the anxiety seriously. So it's different to how we see health anxiety or hypochondriasis, which is a very serious mental health condition that's quite disabling.

1:09The term hypochondria hasn't always meant, in very layman's terms, person who's freaking out about their health without reason. Or maybe with reason, but far more than is necessary or helpful. In the 5th century BC, when physician and philosopher Hippocrates first used the term, it described the part of the body where it was thought illness symptoms were felt. Hypo means under, and chondros means sternum. So it was referring to the upper abdomen.

1:40Today, psychiatrists and psychologists no longer use the term hypochondria, officially, anyways. It was a term that used to be in the old DSM, but it's a very stigmatising term and labelled. So it's been replaced with other terms like health anxiety and illness anxiety. But while the branding might have changed, the debilitating nature of the condition remains the same. And Dr Google, social media and now AI chatbots are making it all worse. If you have health anxiety, do you have cyberchondria?

2:12So the word is called cyberchondria. And what does that mean? I've seen people who have honestly spent hours and hours per day googling their symptoms. I mean, who amongst us hasn't googled our symptoms at some point or self-diagnosed? We've got strategies in this episode for how to stop a googling spiral. This is All in the Mind from ABC Radio National. I'm Sana Kadar. Today, hypochondria, now called health anxiety or illness anxiety, and cyberchondria.

2:42Triggers and treatment.

A nurse shares her spiraling

2:54Yes, I grew up in America and moved out here a number of years ago, so WA has definitely been home for a bit. This is someone we are calling Sarah. She's a mental health nurse in Western Australia. So two years ago, as a 30-something-year-old woman, I was diagnosed with a DVT, and it was missed. So DVT, for those that don't know, is a deep vein thrombosis, which is a clot in the leg that can travel up to the lungs and cause death. It's my eternal fear when I fly. Yep. That's, yep.

3:25So that happened, but it was also misdiagnosed. Doctors thought what she had was an SVT, a superficial vein thrombosis, which is generally far less dangerous than a DVT. Anyways, around the same time that all of this was happening, Sarah also got COVID. So dealing with all the health anxiety related to losing my sense of smell and not getting better and secondary infections and not being believed by GPs to then have a DVT, and it definitely set me spiraling in terms of what this could mean for the potential of having kids and what this could mean as a 30-something-year-old with a DVT and the risk of them coming back, which is much higher.

4:04And what does that spiraling feel like and look like? Are you, like, Googling, you know, obsessively? Yes. Everything. All at once. I am a fixer, so I go, what is the solution? How do I manage this? And I think that's where some of my nursing education has actually been a benefit and a curse to having health anxiety, and the benefit being that I have a bit more knowledge, and then I can go, okay, well, what would be the logical next step? So when I had the DVT or suspected DVT, I said, okay, the next logical step would be to get a scan, and that could quell a bit of that anxiety up until the point that I feel like the health professionals are not taking me seriously or I feel like I'm not being believed, and then the anxiety will spiral further, which becomes, let me do some more research.

4:49How could this affect these other conditions that I have? What medications am I taking? Could any of those have any effect? So it's all of these questions to try and figure out the solution to get to the bottom of it. How do you know that's, like, tipped over into anxiety? Because a lot of that feels really reasonable when something's being misdiagnosed, and we know women aren't always believed in health care settings as well. Like, so much of what you're saying could be perfectly rational, but how do you know that it's gone into the anxiety deep end? I'm so glad you asked, because I think that is the heart of what I learned in my health anxiety journey was realizing that you can very much have a true serious health condition and still have health anxiety.

5:30And realizing that it feels like this, like, for me at least, there's this sense of, like, swirling within, like, I can feel it now even just thinking about that DVT diagnosis. It's that tightness and clenching in my middle section, you know, that heart that starts to just pound a bit harder. Right. The adrenaline starts to pump up a bit as well. And it's this intense focus, so it takes a lot of time away from things I could be enjoying doing. It sounds, like, exhausting. Is it exhausting? It can be, especially when I come out of that time period of intense research.

6:04And I think since I've started recognizing it, I can sense how exhausting it is after the fact, whereas before it was just part of my daily life is now stressful because I don't know what's happening in my body and I don't know what the solution is. Whereas now, when I catch myself in a spiral of health anxiety and I come out of it, it's a much more stark contrast.

How clinicians characterize the condition

6:23So, I've worked in anxiety disorders clinics where we see a range of different people with, I guess, different characterizations of health anxiety. This is Professor Jill Newby from the University of New South Wales. She's also a clinical psychologist at the Black Dog Institute. I've seen people who, they're so worried about having an illness like cancer that they spend a lot of time checking their body. So, like, pressing their body, examining it for bruises, feeling it for lumps.

6:56And it gets so bad that just that very act of compulsively pressing their body becomes painful in itself. So, it kind of causes symptoms that they get very anxious about. We see other people who are quite anxious about contamination. They require all of their family to change, have showers, completely remove all of their clothes in a separate part of the house before they're allowed in the house. And so, that kind of affects all the people around them. Sometimes people with health anxiety avoid doctors altogether.

7:29They're so scared that they'll get diagnosed with the thing that they're worried about. They don't see doctors at all. But on the whole, they are disproportionate users of health services. People with health anxiety use twice the health services as people with well-defined conditions. So, they use more services than people with diabetes, chronic pain, cancer. Wow. It's very costly to the individual as well because they often have a lot of out-of-pocket costs. So, we have found in our own research that people are spending up to $2,000 out-of-pocket in the last three months prior to when we've assessed it.

8:02That's incredible. I've seen people who have been absolutely convinced they have a serious illness. So, for example, HIV. And they've gotten 20 tests. Oh, wow. That have all been negative. But they continue to be convinced. That reassurance and those tests and investigations don't reassure them. Given the scenarios that Jill has described, you won't be surprised to hear that health anxiety can often overlap with OCD, obsessive compulsive disorder. About 20% of people who meet criteria for illness anxiety disorder also meet criteria for OCD.

8:38But actually, there is another disorder that health anxiety is most likely to overlap with. The more common overlap is actually generalized anxiety disorder. So, generalized anxiety disorder is a disorder characterized by excessive worry about a range of different things. So, you might worry about your health, but you also worry about the future. You're so worried, you might worry about how much you're worrying too much. And so, you can get a quite strong overlap between illness anxiety versus and GAD.

9:08And we also see some overlap with depression. So, probably about one in five people with illness anxiety disorder also experienced depression. For Sarah, the mental health nurse in WA, the subject of illness anxiety was only broached in the past year by her psychologist. But looking back now, she suspects the roots of it actually go back to experiences she had in childhood. So, my mother, I remember growing up with her just sharing about how her mother would never really pay attention to her health needs, like when she had really painful periods, things like that.

9:43And so, whenever one of me or my siblings were sick, there would be a lot of attention. So, we would get the care and all of that. Whereas, generally, she was pretty hands-off, not really present. So, you only got concerted attention when you were sick? Yes. Yep. Because, other than that, I did feel like I had to fight for attention. My brothers were diagnosed with a whole host of mental health disorders that, as an adult now and working in the mental health profession, I can see were improperly diagnosed.

10:13And we were in a small community, so we didn't have a lot of those health resources. And so, they had all the attention growing up. And I was the good older sister who always got good grades and kept together. So, that was the dynamic that was at play. And then, once Sarah hit her teenage years, health anxiety crept up in earnest. There was a classmate in front of me who was suspected to have had meningitis. And I sat just behind her in class and about a week later developed symptoms. So, when I presented symptoms, I went in and had a lumbar puncture.

10:45It came back negative. But I ended up having leaking spinal fluid for five weeks that nobody could diagnose. And that caused a whole host of issues that lasted for months with back pain, severe back pain, headaches, nausea, vomiting, the whole bit. And it was just not a good time. If you're keeping count, that is two experiences of misdiagnoses in Sarah's medical history. The fact that she developed health anxiety after all of this perhaps isn't surprising.

11:16It develops in different ways. So, we've tried to look at this by interviewing people with illness anxiety and asking them, what do you think happened around the time when your health anxiety started? And there's a range of different things that people describe. And we don't know the true causes of health anxiety yet. But the things that people describe are chronic stress. So, when they have a lot of different stresses in their life, that brings on physical symptoms that they get worried about. And then that increases their anxiety. For others, it's having new symptoms that they find debilitating and unexplained.

11:49For other people, it might actually be becoming a parent. When you become a parent, you start to think differently about your health. And you get worried what might happen to your children if you do get sick and die. So, that's another thing that tends to set off health anxiety. And then kind of a fourth area is when people are exposed to illness or death or dying in the people around them or even in news stories. This is why the COVID pandemic was a major trigger for many people. Myself included. I was pregnant at the time, so there were multiple reasons to be anxious.

12:23And hearing Jill describe these catalysts also makes me reflect on the other time in my life I dealt with a bit of health anxiety. It was in the years after my partner was diagnosed with stage 3 colorectal cancer. After he had treatment and he was better, for years afterwards, I was pretty convinced the cancer would come back. And every now and then, I would get in these panic spirals that it was going to come back. Usually, this would happen late at night. And thankfully, it wouldn't happen all the time. It wasn't constant. But when it did happen, it was pretty distressing.

12:55Jill says this is called health anxiety by proxy. Where the health anxiety is attached to someone else. So, rather than worrying about their own illness, they're worried their child or loved one is sick or gets sick. Are there particular types of people most at risk of developing illness, anxiety disorder? Like, wondering if there's personality traits that can lead to this? So, there's some research on more social and demographic factors. The more recent data that we've been looking at in the Australian population suggests that women are more likely to experience health anxiety and also people who are non-binary or trans.

13:30We also know young people are more likely to experience health anxiety. So, the 18 to 25-year-old age group has the highest rates of health anxiety and it continues to decrease across the lifespan. That's interesting. Yeah, it's interesting because I think as people get older, they are actually exposed to more health conditions and have family members and loved ones around them getting sick and also dying. But their health anxiety seems to be lower. So, do we have any information on why it's this younger cohort, women and non-binary and trans people that are more likely?

14:02We don't because there's not a whole lot of research into health anxiety compared to other anxiety conditions. But we do know young people in that kind of 18 to 25-year-old age group have increasing rates of anxiety and depression and poor mental health in general. So, I suspect it's part of that trend. You're listening to All in the Mind from ABC Radio National. I'm Sanaa Kadar.

Cyberchondria and the digital age

14:27Now, it's hard to say how common illness anxiety is because as clinical psychologist Professor Jill Newby says, it's an under-researched area. And so, the data isn't great. One figure we do have is from a data set from 20 years ago. And it suggests that about 1 in 20 people have debilitating health anxiety. Health anxiety just is an under-recognised, under-diagnosed and kind of unknown condition. Jill says it's almost certain that figure would be higher now. And one key reason is how much the information landscape has changed in the last 20 years.

15:02There's a new word to describe the endless Googling, chat GPT-ing, social media self-diagnosing we can now do with our health worries. It's called cyberchondria. It might start with even curiosity or worry. So, you'll be, like, searching for information, getting more anxious, further convinced that you have the illness that you're worried about. And that creates this negative cycle of more Googling, more anxiety, more distress. This isn't a term you'll find in the DSM. But there is a whole research literature on it.

15:33And you can understand why people do this. The appeal of a quick answer is tempting. But it also can undermine people's feeling that they can cope with a bit of uncertainty or unknowns. And that can be a problem in itself. Yeah, it's kind of like an uncertainty canceller. Yeah. We do know from the research that there's this link between intolerance of uncertainty and health anxiety. So, when you are afraid of the unknown and you feel like you can't tolerate things not being completely certain, that's related to health anxiety.

16:04That's interesting. How many of the clients you see, do you reckon, have cyberchondria as well? Like, how much is Googling a part of their illness? The majority do. Right. For a subset of people who are maybe further on the therapy path, so they've gotten some treatment and help, some of them go cold turkey and they just don't Google their symptoms. But I've also seen people who know the risks of Googling their symptoms and they've just stopped. They can't do it themselves because they know that it's just going to exacerbate their condition. Sometimes they ask their partner or loved one to do it on their behalf.

16:36So, then they can filter out the scary stuff and only tell them the reassuring information. I have to imagine cyberchondria is getting a lot worse now with AI. You know, like, if people can tap their symptoms into chat, GPT or whatever else, they get a lot more personalised kind of response. This has got to make it a whole lot worse. I suspect it will. And that becomes a bit concerning when there can be misinformation that is fed to you within those tools and you can't really assess how good the information is and whether it's actually applied to you in your situation.

17:08And then there's the whole issue of wearable tech. Smart watches and rings that monitor your heart rate, sleeping patterns, stress levels, and a whole lot more. There's research to suggest, well, these might be helpful devices for a lot of people. In certain people, they can increase anxiety, leading to compulsive checking and more worrying when things seem slightly off. It's a case of more information not necessarily being empowering, but overwhelming. It's thought that people who are already anxious to begin with are most likely to experience these not-so-great effects.

17:43So if there's anyone listening who's like, oh, cyberchondria, that sounds like something I'm engaged in, how can they pull themselves out of that in the moment? Are there any tips you can share on what someone can do if they're going down a spiral? Well, the first thing is recognising that you're doing it, because I think a lot of people get engaged in that without being fully aware that it has become a pattern. Then we try and help people identify when are the riskier times when they're going to engage in that behaviour.

18:14So if it's at night, for example, or when they're alone, then we work with them to find strategies to put other things in place. So rather than turning straight to your phone to have a book there to read that's boring but unrelated to health, if it's when you're alone that you're more likely to do that, to actually schedule in time with other people that you could see. And then there's other strategies around putting it off, so tolerating the urge to engage in bouts of Googling and trying to increase the amount of time you're able to delay that urge to do that.

18:45So we might start with a minute and then increase the amount of time that people wait when they feel the urge to engage in the Googling, because that can help shift focus, shift attention to something else and also feel a sense of control over their behaviour as well.

19:02So, cybrochondria can turbocharge health anxiety. And when it comes to diagnosis, often when people have health anxiety, at first they don't necessarily recognise it as such. And when it's raised as a possible explanation, they don't always want to hear it. Well, we know that the majority of people with health anxiety don't seek treatment from the first place through mental health services. They go to physical health services. And so it actually tends to be more common in those kinds of clinics.

19:32And then kind of it's a last resort diagnosis for some people. Do people initially, when they get diagnosed or it's, you know, broached that this might be what's going on, do people get angry or offended and think that, you know, their symptoms aren't being taken seriously? Like, what's the response you've seen play out? It depends. Some people, they're probably already on the way to acknowledging that this is an anxiety problem. When you explain how this works and that health anxiety is a real illness, that can be taken quite well. But for a lot of people, it's not.

20:04They do feel dismissed. They feel like doctors or health professionals are saying it's all in their head. And when you're worried about your health, it might also be related to other experiences you've had in your life with the health system. We know that people with health anxiety often have either witnessed or experienced themselves being dismissed and having misdiagnoses in their loved ones and that leading to catastrophic consequences. And so for some people, it's taken badly and they do get angry and upset and it's a really hard time.

20:38And some people never accept that it's an anxiety problem.

Finding the right CBT treatment

20:40For Sarah, the nurse in WA, when her psychologist raised the idea of health anxiety, she thought it made a lot of sense. It wasn't until last year when my psychologist suggested health anxiety and I started reading a bit more about it that I was like, oh, you can have health anxiety while having health issues. Sarah tells me she felt really seen. She started treatment right away, a combination of online modules and in-person sessions. So a lot of it is looking at the facts. It's going, what is a feeling, what is a sensation and what are the facts and what's in your power and what's not.

21:16Basically, she had CBT, cognitive behaviour therapy, which is the main treatment for health anxiety, but it's not the standard kind. It's been modified in certain key ways. With standard CBT, we might work on strategies like thought challenging to think about alternative explanations for the things you're convinced with. Sometimes that in health anxiety, that can lead to this kind of battle where a person has quite fixed views on what their symptoms might mean. And so we don't quite want to get into that battle.

21:47So we more teach strategies of, OK, well, how can you notice your thoughts and kind of re-engage or disengage from those thoughts onto the present moment, get more absorbed to take your focus off your body, off your symptoms, off your thoughts, so you can pay attention to the present moment. So we do more strategies like that as opposed to some of the strategies that are normally focused on in the C bit of the CBT, which is the cognitions. CBT is highly effective for health anxiety.

22:18Jill has seen people go from spending hours a day searching their symptoms to not searching at all. But because the condition is, as she said, not well understood or recognised, she's also seen patients who've gone years getting the wrong therapy entirely. Sorry, we had a participant in one of our studies and they had spent years in psychodynamic therapy where they were seeing a therapist daily and it was the wrong treatment for them. And just describe what psychodynamic is, like they're going into their past and their childhood and that kind of thing, right?

22:50So looking to their past and explanations for that and working with a therapist on psychoanalysis every day and they had been doing that for years and it was terribly sad for me that they came into a treatment trial for cognitive behavioural therapy and they got better, which is great. But it also came with a grief that this person had spent years with the wrong type of therapy and not getting better. But then there was this intervention that transformed their life and completely changed the way they thought about their symptoms and understood about health anxiety.

23:26And that's great on the one hand because that person's recovered, but also terribly sad that they'd spent years trying the wrong treatment and not getting an effective support for them. And that's sad also that that therapist perhaps didn't recognise that they needed something else. Yeah. Yeah, I think a lot of people don't know the difference between what is psychodynamic therapy, what is CBT, like, you know, what are the different functions of these kinds of things? Yeah, and sometimes clinicians don't always explain the kinds of therapies that they are delivering and the client doesn't know.

23:59They don't know that there's a better alternative, that it's often up to who you see at the time that you see them and what they specialise in. And we've got a long way to go to making sure we get the right evidence-based treatment to the right people for the right condition. Yeah, if you have health anxiety, talking about how your parents treated you in childhood isn't necessarily going to help unless they were very anxious about their health as well. No, and for some people, even going to a general counsellor may not help either. You need an anxiety specialist. And so what is your health anxiety like these days?

24:34Is it still as bad as it was or does it flare up and go away? What's it like? I think it still flares. However, I also can catch it a lot sooner. So last week I injured my neck from sleeping. And I honestly going into that, yeah, there was a bit of anxiety in the moment. I called my best friend in America who's a GP in the middle of the night going, do I need to call triple zero? Like I'm in so much pain I can't move. But I felt like I managed it reasonable. I wasn't doing a lot of internet checking. I booked a massage with my massage therapist that afternoon. That was my plan.

25:04And he mentioned, look, based on what you're experiencing, it could be something a bit more serious. So I booked a GP appointment. And in that time frame, you know, the question was, is this a disc herniation? And that was when I started Googling. So I spent that whole afternoon after work jumping from massage therapist to GP to getting a scan done to going to the chemist to pick up some NSAIDs to, you know, going, is this okay while I take a blood thinner prophylactically to prevent another DBT? So it really just kind of created this perfect storm of me wanting to advocate for my health and make sure that I'm taking the right medication for the imminent concern versus the prophylactic concern.

25:42And what is a disc herniation? And, you know, didn't even have the scan results yet. And realizing when I was in the middle of the throes of how disc herniation can take months to heal and possibly need surgery that I went, oops, I've disengaged in health anxiety. And were you able to stop at that at that point? Yes. Wow. Okay, that's amazing. It's not a herniation, by the way. Okay, good. I'm really glad to hear.

What loved ones should know

26:09What do you think family and friends should know about illness, anxiety disorder? Because it can be a lot to watch someone go through this and deal with it. Like, there's a lot of fallout that comes with that. So what would you say to people who have a loved one who's dealing with illness, anxiety disorder? I mean, the first thing is just acknowledging that this is a very distressing, very frightening and very worrying time for their loved one. And even though it can be sometimes quite frustrating, but also anxiety provoking and uncertain because you don't know how to deal with it, to know that that person is suffering and to keep that in mind.

26:47We do know that avoidance tends to make anxiety feel better in the short term, but worse in the long term. So if you can work with that person to try and gradually face some of the things that they're worried about. Sometimes people engage in a lot of reassurance seeking. So when you're health anxious, you're really worried about your health, but you ask everyone around you, do you think this might be a sign of illness? What do you think about this? Can you reassure me that I'm not sick? And that reassurance, while it feels like you're doing a good thing for the person, it can sometimes just lead to worse anxiety over time.

27:25So do you not reassure them? What do you do? It's kind of working with that person to try and find a happy medium of not overly reassuring them again and again, because it just undermines their confidence. But working on firstly getting professional support, but also not being that go-to person of reassuring them again and again. That's so tricky. I feel like because you'd be worrying about alienating the person as well. Like you don't just want to go straight from, you've asked me this a lot of times. I think you need some help. Yeah. You know, you really have to play that well. Yeah, I think you need to be clever and sensible and smart.

27:59I love this question because even as a mental health professional, you know, oftentimes we see families who don't believe in mental health. And I think if I want them to know anything, it's believe your loved one, understand that their experience is real, even if you don't understand it. And I would say get educated. The best thing that you can do to understand someone else's experience is to learn more about it. And that's that's empathy. And that's showing up in ways that you can help support your loved ones, even if it makes absolutely no sense to yourself.

28:30That is Sarah, a mental health nurse from WA who has dealt with health anxiety for many years. And you also heard from clinical psychologist, Professor Jill Newby from the University of New South Wales. Now, in our show notes, we are going to link to a couple of resources on health anxiety. There's a lot of help that can be found online for this condition. So head to our show notes to find those if you're interested. That is it for All in the Mind this week. Thanks to producer Rose Kerr, senior producer James Bullen, and sound engineer Isabella Troppiano.

29:06I'm Sana Khadar, and thankfully, I no longer get frequent panic spirals about my partner's health. It seems like time and distance from his illness has cured that one. Anyways, thanks for listening. I'll catch you next time.

29:26You've been listening to an ABC podcast. Discover more great ABC podcasts, live radio and exclusives on the ABC Listen app.