So when what I’ve come to call “late-onset hypochondria” hit in my 40s, I wasn’t ready for it. And I didn’t know how scary it can be. In its own way, it is a disease. (Strictly speaking hypochondriasis and health anxiety are two separate ailments with overlapping features.) Underlying all of this were deaths – lots of them. My cousin died, aged 51, her death shrouded in whispers and secrets. then a friend died, then another, then another. That last friend, Callie, felt fine, went to the doctor, and died two weeks later. All these friends were also 51 when they died and in my mind it seemed impossible to surpass that age. Then a family friend died, then my aunt, then my uncle. Through it all I knew my dad was sick too, on his own final flight path, but he didn’t want his illness to define him, and he wasn’t and very few knew it. Secrets and 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 on one memorable day I got Parkinson’s, liver cancer and Paget’s disease (some members of my maternal family have it) all in one fell swoop. It was Thursday and I was catatonic with fear. All I could think about was how could I make school work while I was doing chemo? How would I deal with the shaking and the shaking and the pains in my skull? I had two children, one still a baby, could I breastfeed her with chemo? The cycle would always be the same. I would hear about someone getting sick, I would ask too many questions. I will develop symptoms. I would be horrified and could tell no one, letting no light or perspective in, no hope of confirmation. I couldn’t go to the doctor because Callie was fine, she went to the doctor and then she was dead. In my mind I was convinced if I could just avoid the diagnosis, I could avoid death. It was tiring and scary. Eventually something would give, I could tell a person who would give me a reality check and I would have a break, until the cycle started again. Of course, there were moments when I realized that this must be my mind, being powerful but destructive. And the symptoms would subside, until next time. “One memorable day I had Parkinson’s, liver cancer and Paget’s disease. I was catatonic with fear”: Annalisa Barbieri Illustration: Nathalie Lees/The Observer Then, finally, one day my nipple started bleeding, a symptom so extreme that I knew my mind couldn’t be responsible. The red in all of this somehow made me take notice and go back to my childhood home (for some reason this encouraged me) I was able to call not my current doctor, but a removed one, my previous doctor with whom I had stayed in touch with. I told him my symptoms. He paused at the end of the phone as I twisted the net bedroom curtains between finger and thumb, wondering how long I had left. “I can’t tell you that you don’t have breast cancer,” she said very slowly, “but I can tell you that you should see your doctor and you should tell him about your health concerns.” Health anxiety? Not only did I not realize I had this, I didn’t realize I could talk to my doctor about it. My doctor, thankfully, was excellent. He listened and immediately put my mind at ease about some of the other ailments I was sure I had at the time and sent me for tests on others including my breast (which was fine, it was a rash and cleared up but I think of it as a godsend now ). But, more importantly, he also put me on the list for a course in CBT, cognitive behavioral therapy. While I was waiting for CBT, my father died. The body is a theater where we stage our inner conflicts I was wary of CBT, but my therapist, Jill, was brilliant and wonderful and was the perfect solution. After taking my history, Jill challenged my belief that I was ill by asking for evidence. I can still hear her voice now asking for solid evidence for my cases and it’s a technique I still practice. So the pain in my leg = cancer would dissolve until it became: “It’s very unlikely to be cancer, but if the pain persists, it makes sense to go to the doctor.” It sounds easy and takes a long time to actually work, but it worked for me. Reframing my worry, facing the fact that I had no solid evidence that I was sick, and reframing the worry helped me deal with it in small pieces. I also learned to tell the trusted people around me what was going on so that they could help ‘let go’ of the worry (it’s not appropriate to tell another hypochondriac!) Jill also got me to stop asking about people’s symptoms and taught me that it was okay to just say, “Sorry to hear that,” if I heard someone was sick/died, without also asking for a full medical history, which it will digest and incarnate. (Combining the ability to search for any symptom with a constant conveyor belt of new diseases and variants presented to us at every news feed is a heady mix for those predisposed to health anxiety.) Peter Tyrer, professor of community psychiatry at Imperial College London, has a special interest in health anxiety (called illness anxiety disorder in the US and falls under the DSM-5 psychiatric classification) and has written several papers on the subject. the British Medical Journal in 2016, which called it a “silent epidemic of disability” that was reaching “epidemic proportions”. In a 2006 study of some 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 more serious explanation of symptoms, even though these may be very unusual.” There’s no point in telling these people they have a 1 in 1,000 chance of getting sick, he said, “it just convinces them that they are indeed that person.” Tyrer further explained to me that some people, like myself, avoid and avoid the body at all costs and it is of course “impossible to know how many of them there are”. And then there are those who need near-constant reassurance from doctors who, however, are not trained in mental health and thus provide resource-draining clinical examination after clinical examination without providing a long-term solution. It doesn’t root the problem. Tyrer is an advocate of CBT to help with health anxiety. I told psychoanalyst Alessandra Lemma my story. Lemma is someone I have worked with in the past and I not only trusted her but valued her insights into how my brain works. “What I recognize,” he said, “is a kind of architectural hypochondria, and often a real experience of illness either of oneself or of someone one is very close to. It is very rare that health anxiety comes out of nowhere and it is this intersection of this encounter with vulnerability and mortality that often occurs at a transitional point in life. So you often get that with young people getting ready to go to university, or with people retiring, etc. we fear losing someone with whom we often identify and whose physical symptoms we can take.” But why couldn’t I think, I’m worried about my dad? Why this big drama? “Because,” Lemma expanded, “as a general way of thinking about it, the body and our relationship with it is a kind of theater, if you will, in which we stage our inner conflicts, and one of the main reasons psychological conflicts arise . it translates into physical symptoms when we don’t yet have the words or even a conscious recognition of what is troubling us.” Lemma explained that talking to someone – your doctor, a therapist or a trusted friend – can help because you can start to put these symptoms into words, which can then start to dissolve the worry. For me it was like I started letting light into those dark corners, but at first it was so hard to talk about what was going on because I had this irrational fear that as long as I didn’t talk, nothing bad would happen. The hypochondrium literally felt like a monster in my body that I had to appease by being quiet. It has been six years since I have been free of it and so long since I have been able to write about it. (And yes, I made it to 51!) I’m still alert and in control. While writing this, I looked up the symptoms of Paget’s disease and immediately felt myself turning the corner again on health anxiety street. So I stopped reading. Although the monster in me is now largely dormant, it can reawaken when I’m anxious and need to feel in control. And one thing I’ve learned through all of this is that, surprisingly, worrying about dying is a strange way of trying to feel in control. Conversations with Annalisa Barbieri, Series 3, out now (pod.link/1567190358)
