Patients so terrified of taking pills they won’t even use painkillers

For five years, Oliver Neely, 31, has nursed swollen and painful hands, triggered by repetitive use of a computer mouse at work and gaming at home during his teens. Despite seeking medical advice, his hand remains swollen.

But that’s not because the anti-inflammatories he was prescribed haven’t worked. It stems from Oliver’s extreme aversion to taking medication. As a child and young adult, Oliver refused to take any pills — prescription or over-the-counter — even if he was in excruciating pain or felt so unwell he needed to take to his bed.

Oliver suffers from pharmacophobia, as it is medically known: the extreme fear and mistrust of medicines.

At the opposite extreme is pharmacophilia, where people like to take medication when they don’t really need it.

Oliver, who lives in Folkestone, Kent, has been like this since adolescence.

While other boys his age were obsessing about their favourite football team, for instance, he became obsessed with his health and the ways to treat it. He worried about medications and what they contained — so much so that when he got an infection and was prescribed antibiotics, he threw them away.

‘I became preoccupied with medicines and drugs,’ he says. ‘My fear is I just don’t know what’s really in these drugs and whether they’d affect me adversely. I’ve suffered headaches, ignored them; stomach pains, ignored them; got bugs, infections and the usual coughs and flu. But for many years I refused to take medication. I know it’s not best for me, but I fear medication so much that I won’t risk it.’

Pharmacophobia can be triggered by various factors, explains Dr Becky Spelman, a psychologist and founder of the Private Therapy Clinic in London. These include ‘negative past experiences with medication’, fear of side-effects or addiction, or a general distrust of pharmaceuticals.

‘People may have varying degrees of fear or aversion towards medications, ranging from mild discomfort to severe phobia,’ she says.

It is not uncommon for people to experience some level of apprehension when it comes to taking medication, suggests Dr Spelman — which is not necessarily a bad thing, as all medications come with potential side-effects, so should be taken prudently.

But pharmacophobia could help explain poor adherence to medication, which is a major problem, with between 30 and 50 per cent of patients thought to be not taking medication as directed. ‘Lack of adherence to medication is a complex puzzle and pharmacophobic beliefs will only be one contributing factor to the high rates observed in the general population,’ says Dr Meg Arroll, a psychologist and assessor for the British Psychological Society.

Other factors include poor communication between doctors and patients, and lack of trust in the healthcare system.

‘This is highly problematic, as non-adherence to treatment can lead to substantial worsening of an illness or condition, as well as increased healthcare costs with more visits to doctors and hospital, plus more tests or treatments needed,’ says Dr Arroll.

However, for people with pharmacophobia, the fear of medication means they won’t take any even when it really is in their best interests. Dimple Bhatia, a pharmacist in Tollesbury, Essex, says pharmacophobia is more likely ‘if the patient has not had a condition fully explained, treatment discussed and potential side-effects explored’.

Pharmacist and Reading University lecturer Gurinder Singh Purewal adds: ‘Patients with fear of medicines feel judged, and feel scared of being told off.

‘Often, they miss appointments. Some of the common examples I’ve dealt with are vaccines, statins and antidepressants.’

Oliver believes his fear may have stemmed from anxiety about taking liquid omega-3 capsules to help improve his concentration as a child. ‘I didn’t like the sensation of them going down my throat,’ he recalls. ‘I also could never swallow paracetamol and had to have the dissolvable ones.’

Then other triggers added to it. ‘When I hit my teens, I began to question what was in these medications. I’d ask for the packet to read the back, then try to find out what all the ingredients were.

‘I began to worry how they’d affect my body and whether they’d interact with other things.’

As he got older, Oliver recalls reading newspapers and watching TV programmes and learning about health. ‘I started to become more aware of my health and the control I could have over it,’ he says.

‘I wanted to resolve the situation but just didn’t like the idea of taking the medication. I never took it — not even a paracetamol,’ he says, even though his exasperated mother tried to comfort and reassure him.

There is a growing concern that pharmacophobia is ‘on the rise’, explains Dr Spelman. ‘This is partially attributed to social media — where misinformation and fear-mongering about medications are spread — and the increased influence of conspiracy theories, which exploit existing anxieties and promote distrust in pharmaceuticals, contributing to the development or reinforcement of pharmacophobia,’ she says.

Dr Henk Swanepoel, a neuropsychologist at the private Cygnet Health Care clinic in Bristol, adds that people with pharmacophobia ‘may also experience intense anxiety, in the form of panic attacks, for example’.

‘Often, people find it difficult to think of or even to see drugs in real life. This fear is irrational, but patients are still unable to change the behaviour.’

Talking therapy is the gold standard way to treat pharmacophobia (and other phobias).

One option is exposure therapy, which involves gradually exposing individuals to their fear of medication, possibly through pictures of drugs, in a controlled environment, helping ‘desensitise’ them and overcome their phobia.

Cognitive behavioural therapy (CBT) — a talking therapy where negative thoughts and beliefs are challenged and replaced with more positive thinking patterns — can also help, says Dr Spelman.

Dr Arroll advises people with pharmacophobia to talk to their doctor. ‘It can be helpful to see if there was point in your history when you started to feel a sense of fear about taking medication, for instance if a tablet became stuck when trying to swallow it during childhood, and this produced a phobic association,’ she says.

‘However, this isn’t the case for everyone, and so it is often helpful to tackle the immediate response: breathing and relaxation exercises can help to manage a fear response when taking medicines.

‘It can also be beneficial to take your first dose in a reassuring environment, such as a chemist. As with any phobia, the key is to break what we call the ‘fear-avoidance pattern’ so that you take care of your overall health.’

On numerous occasions, Oliver saw his doctor because he was suffering from anxiety and depression linked to his pharmacophobia. He was prescribed antidepressant pills but says that he didn’t take them.

However, as the years passed and his symptoms worsened, he reluctantly accepted prescriptions for more antidepressants. ‘It was terrifying for me — I was scared they might harm me. But I needed help and I had to try something.’

In the first few weeks, Oliver almost gave up, so terrified was he of the side-effects. ‘I felt all the initial things you get when first taking a new anti-depressant, plus many more symptoms generated by my fear of what the medication could do to me. But after a short while it settled and I began to feel generally much less anxious.’

He also sought help from the charity Anxiety UK, the Headspace app (which focuses on mindfulness and meditation), as well as doctors and a therapist, and was slowly able to accept more medications.

‘I know avoiding medication could one day harm my health and I have worked on finding ways to overcome it. I still avoid medications when I can, but now I have more of a balance.’