In an English churchyard, the Irish comedian Spike Milligan’s gravestone has a chastening message for those who knew him: “I told you I was ill.”
We can all identify with Milligan’s concerns. Who hasn’t panic-researched supposed symptoms, fearing the worst? His joke speaks to our fear that legitimate health concerns will be shrugged off as nothing to worry about – “Oh, it’s just hypochondria.”
But there’s a difference between the occasional appointment with Dr Google and long-term, serious anxiety over health. This persistent fear of an undiagnosed illness may lead to endless doctor’s visits, or the opposite: total avoidance of medical care. What if we’re not taking hypochondria itself seriously enough?
That’s the takeaway from a recent Swedish study that found that people with what is now called illness anxiety disorder may die earlier than others. It’s a disturbing finding that makes the disorder sound like a self-fulfilling prophecy. As one anxious observer put it: “It’s not enough just to have worries – now you have to worry about your worries.”
But that doesn’t mean those with the disorder should despair. The study has an important, and ultimately hopeful, message. “This is a serious mental disorder. This is not a peculiarity or something that should be ridiculed,” says its lead author, David Mataix-Cols of Sweden’s Karolinska Institute. The deaths recorded in the study were largely preventable, the researchers noted. Their findings underscore the need for diagnosis and treatment – and the good news is that treatment is highly effective.
The study, which appeared in JAMA Psychiatry, examined records on about 45,000 people, comparing death rates among those with diagnosed hypochondriasis (about 4,000 people) against those without it (about 41,000 demographically similar individuals). They found people with the disorder were 84% more likely to die in the study period, and that they died an average of five years younger than those without the diagnosis, at 70 versus 75 years old.
It all might sound counterintuitive: surely the people most concerned about their health would be taking good care of it? But “like all anxiety disorders and chronic stress over many years, decades, we know that that’s not good for your health”, says Mataix-Cols, though he emphasizes that the study does not investigate the reasons behind the disparity.
Subjects with the disorder died at higher rates of both natural and unnatural causes, with most of the unnatural deaths a result of suicide. That, in particular, might seem surprising among people seen as having a great fear of death. But people with illness anxiety disorder may experience a “great deal of suffering and hopelessness”, Mataix-Cols says, including feeling that others don’t understand them. As for natural causes, the researchers noted that anxiety is associated with cardiovascular diseases, and Mataix-Cols says some subjects with the condition also struggled with chronic stress, as well as drugs and alcohol. (He also points out that while the disparity might seem grim, the absolute risk of death among people with health anxiety remained low.)
And then there’s the lack of access to treatment. The “biggest surprise” to Mataix-Cols was how few people had actually been diagnosed with the disorder compared with the number known to be living with it. Studies have shown about 3-5% of people have “what we call pathological health anxiety”, Mataix-Cols says. “According to those numbers, we should have found 100,000 to 200,000 people [in Sweden] with this diagnosis over 20 years. And we only found 4,000,” meaning the disorder is “severely under-diagnosed” and thus under-treated.
‘We need to take stress and anxiety very seriously’
Diagnosis of illness anxiety disorder calls for sensitivity, especially in a world in which patients’ real physical ailments – for instance, women’s pain – can be wrongly dismissed. Ideally, doctors aren’t telling patients to take solace in the idea that “it’s all in your head”. Instead, they’re recognizing mental health challenges as part of the bigger picture.
When doctors see a patient seeking what appears to be excessive care, they might decide to refer the patient to a therapist.
Dr Jessie Borelli, a clinical psychologist and a professor at the University of California, Irvine, says she gets these referrals “frequently”. She’s heard some “horror stories” about that handoff, but she’s also seen doctors approach it with care. “I think the way that they do this best is talking about the stress of having health concerns or health anxiety – how much stress and difficulty that causes, and the need for additional support in managing that,” Borelli says. “People are receptive, usually, to that conversation.”
Fortunately, experts say treatments for the disorder are very effective, particularly cognitive behavioral therapy. Therapists and patients may, for example, work together to identify behaviors that are rooted in anxiety and work through them through gradual exposure to the situations that worry them.
If a patient wants to get an additional medical screening, Dr Nora Brier says “we collaboratively talk about it” to determine whether it’s necessary or an anxiety-based decision. If it’s the latter, “the exposure then would be to not make the appointment and to not Google or double-check, and to tolerate that anxiety of just sitting at home and thinking ‘maybe I should have gone to that appointment’”, says Brier, who is a psychologist and assistant professor of clinical psychiatry at the University of Pennsylvania. Medications, including the antidepressants known as SSRIs, can also be helpful.
Illness anxiety patients may continue to seek physical care, but that can be done in conjunction with therapy. And not everyone comes to therapy through their doctor – for instance, patients may refer themselves for therapy if they are too fearful of a diagnosis to see a doctor and recognize they need help navigating that anxiety.
It all gets at the heart of anxiety more broadly: the struggle to live with not knowing. “Hypochondria is, in some ways, a challenge to medicine’s need for certainty,” says Dr Catherine Belling, an associate professor of medical education at Northwestern University. The best doctor in the world can’t be 100% sure that there’s nothing physically wrong with a patient. Not only does the patient have to tolerate that, the doctor does, too.
It requires a doctor to say, “Well, I don’t know. We have to watch and wait and see, but in the meantime, we could do something about your anxiety,” Belling adds. In fact, doctors are familiar with these worries themselves: in their first years, medical students are known for suddenly realizing they have every disorder in the book.
One big threat for people with health anxiety right now: spending hours on the internet. Among the key elements of illness anxiety disorder is reassurance seeking, says Mataix-Cols, and with Google, we’re all self-diagnosing medical students. There’s even a term for it: cyberchondria.
The pandemic also brought health concerns to the forefront (though it’s too soon to say for sure that it increased the prevalence of the disorder itself, says Brier). A 2021 study warned of a growing risk of excessive health anxiety amid Covid, with a very real disease constantly on our minds, and an Iranian study published last year pointed to higher health anxiety among people whose relatives had had Covid.
Mataix-Cols hopes his study, which has drawn international press, will get more patients into treatment by improving diagnosis and communication between physicians and psychotherapists.
Borelli, who was not involved in the Swedish study, also sees some hope in it. “In the case of something like illness anxiety, where it’s pretty clear that there’s not an underlying serious disease, it’s also the case that being very worried about your health can actually cause significant health concerns, as is evident in this study,” she says.
“We know that we do need to take stress and anxiety very seriously. And the way in which we take it seriously is by shining a light on it.”
• In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org
