Surrounded, as I was growing up, by slightly health-hysterical women (“How are you?” I once asked an aunt over the phone. “I’m on a mobile intravenous drip,” was the answer), I never worried about my own health. There simply wasn’t room to anyway, because someone was always more ill. How I laughed at my friend Mark when, in our 20s, he thought he was dying due to some dodgy bolognese. Even when I smoked and developed what would now be a Google-worthy search – a searing pain in my lungs – I just lay on a tennis ball and massaged the spot. It went.
So when my, as I came to call it, “late-onset hypochondria” hit, in my 40s, I wasn’t ready for it. And I didn’t know how terrifying it could be. In its own way, it is an illness. (Strictly speaking hypochondriasis and health anxiety are two separate malaises with overlapping features.) The background to all this was deaths – lots of them. My cousin died, aged 51, her death shrouded in whispers and secrets; then a friend died, then another, then another. This last friend, Callie, had felt fine, gone to the doctor and was dead two weeks later. All these friends had also been 51 when they died and in my mind, it seemed impossible to get beyond that age.
Then a family friend died, then my aunt, then my uncle. Throughout all this I knew my dad was also ill, on his own final flight path, but he didn’t want to be defined by his illness, and so he wasn’t and very few people knew. The secrets and the fear mixed together to make their own special kind of dynamite.
Somewhere in the middle of all this it started. The symptoms. They varied as did the “diagnoses”, but one memorable day I had Parkinson’s, liver cancer and Paget’s disease (some members of my maternal family have this) all in one go. It was a Thursday and I was catatonic with fear. All I could think about was, how could I do the school run while having chemotherapy? How would I cope with the tremors and shakes and the pains in my skull? I had two children, one still a baby, could I breastfeed her on chemo?
The cycle would always be the same. I would hear about someone getting ill, I would ask too many questions. I would develop the symptoms. I would be terrified and be able to tell no one, letting no light or perspective in, neither any hope of reassurance. I couldn’t go to the doctor because Callie had been fine, gone to the doctor, and then she was dead. In my mind I was convinced if I could just avoid diagnosis, I could avoid death. It was exhausting and frightening. Eventually something would give, I would be able to tell one person who would give me a reality check and I would have some respite, until the whole cycle started again. Of course, there were moments I realised this must be my mind, being powerful but destructive. And the symptoms would fade, until the next time.
Then, eventually, one day my nipple started bleeding, a symptom so extreme I knew my mind could not be responsible. The red of it all somehow made me take notice and back at my childhood home (for some reason this emboldened me) I was able to ring not my current GP, but one removed, my previous doctor with whom I had stayed in touch. I told him my symptoms. He paused at the end of the phone as I rolled the bedroom net curtains in between finger and thumb, wondering how long I had left.
“I can’t tell you that you don’t have breast cancer,” he said very slowly, “but I can tell you that you need to see your GP and you need to tell him about your health anxiety.” Health anxiety? Not only did I not realise I had this, but I didn’t realise I could talk to my doctor about it.
My GP, fortunately, was brilliant. He listened and right away put my mind at rest about some of the other diseases I was sure I had at the time and sent me off for tests for others, including on my breast (which was fine, it was a rash and cleared up, but I think of it as a godsend now). But, crucially, he also put me on the list for a course of CBT, cognitive behavioural therapy.
While I was waiting for CBT, my father died.
I was reticent about CBT, but my therapist, Jill, was extraordinary and wonderful and it was the perfect solution. After taking my history, Jill would challenge my belief that I was ill by asking for evidence. I can still hear her voice now asking for hard evidence for my assumptions and it’s a technique I still practise. So the pain in my leg = cancer would be broken down until it became: “It’s very unlikely to be cancer, but if the pain continues, it’s sensible to go to the doctor.” It sounds facile and it takes a lot of time to really work, but work it did for me. Reframing my worry, making myself face up to the fact that I had no hard evidence that I was ill, and restructuring the worry helped me deal with it in bite-size pieces. I also learned to tell trusted people around me what was going on so they could help “pop” the worry (it’s not advisable to tell another hypochondriac!)
Jill also made me stop asking about people’s symptoms and taught me it was OK just to say, “I’m sorry to hear that,” if I heard someone was ill/had died, without also asking for a full medical history, which I would then digest and embody. (The combination of an ability to Google any symptom with a constant conveyor belt of new diseases and variants being served up to us at every news offering is a heady mix for those with a predisposition to health anxiety.)
Peter Tyrer, professor of community psychiatry at Imperial College London, has a special interest in health anxiety (it’s called illness anxiety disorder in the US and comes under the psychiatric classification of DSM-5) and has written several papers on the subject, one in the British Medical Journal in 2016, which called it a “silent, disabling epidemic” that was reaching “epidemic proportions”. In a study in 2006 carried out in certain north Nottinghamshire specialist clinics (respiratory, gastroenterology, endocrinology), 12% had excessive health anxiety. Four years later, this had risen to 20% in the same clinics. Tyrer attributed this rise to “cyberchondria” and our addiction to Googling. “People with health anxiety,” he wrote, “pay selective attention to the most serious explanation of symptoms even though these may be very uncommon.” It’s no point telling those people they have a 1 in 1,000 chance of being ill, he said, “it just convinces them they are indeed that one person.”
Tyrer further explained to me that some people, like me, are avoidant and body-swerve medical reassurance at all costs and it’s of course “impossible to know how many of these there are”. And then there are those who need almost constant reassurance from doctors, who are, however, not trained in mental health and so provide clinical test after test with drains on resources without providing a long-term solution. It doesn’t pull the problem out at the roots. Tyrer is an advocate of CBT to help with health anxiety.
I told psychoanalyst Alessandra Lemma my story. Lemma is someone I’ve worked with before and I not only trusted her but valued her insights into the workings of my brain. “What I recognise,” she said, “is a kind of architecture of hypochondria and often an actual experience of illness either of one’s self or someone you’ve very close to. It’s very rare that health anxiety comes out of nowhere and it’s that intersection of that encounter with vulnerability and mortality, plus it often comes out at a transitional point in life. So you often get it with young people about to go to university, or people retiring, etc. For you it was this terrible concern about your dad, this proud, strong dad who was struggling with something that was beyond him, and when we are afraid of losing someone we often identify with them and can take on their physical symptoms.”
But why couldn’t I just think, I’m worried about my dad? Why this great drama?
“Because,” expanded Lemma, “as a general way of thinking about it, the body and our relationship with it is a kind of theatre, if you like, on which we stage our inner conflicts and one of the primary reasons psychological conflicts get translated into bodily symptoms is when we don’t yet have the words or even a conscious recognition of what it is that troubles us.”
Lemma explained that talking to someone – the doctor, a therapist or a trusted friend – can help because you can start to translate those symptoms into words, which can then start to dissolve the worry. For me it was like starting to let the light into those dark corners, but in the beginning it was so hard to talk about what was going on because I had this irrational fear that as long as I didn’t say it, nothing bad would happen. The hypochondria literally felt like a monster in my body that I had to appease by staying quiet.
It’s now been six years that I’ve been free of this and that long since I’ve been able to write about it. (And yes I did reach age 51!) I’m still vigilant and keep myself in check. While writing this I looked up the symptoms of Paget’s disease and could immediately feel myself turning the corner into health-anxiety street again. So I stopped reading.
Although the monster in me now largely sleeps, it can reawaken when I’m anxious and need to feel in control. And one thing I’ve learned through all this is that, perversely, worrying that you’re dying is a weird way of trying to feel in control.
Conversations with Annalisa Barbieri, Series 3, is out now (pod.link/1567190358)