Fear of Diabetes

Why the clinical word is not diabetophobia

The 2008 encyclopedia of phobias enters diabetophobia only as a cross-reference to its own entry for diabetes, fear of. No case, no figure, no history.

The research literature does not use that word at all. It uses two others: diabetes distress, measured on a scale with a defined cut-off, and fear of progression, measured with its own questionnaire. Both describe people who have the diagnosis already, which is the opposite of what a phobia name implies.

What the Qom sample showed

A cross-sectional study conducted over three months from December 2018 examined 519 community-dwelling people aged 60 and over in Qom, in Iran, using the diabetes distress scale with a score of 3 or more counted as distress. Mean age was 68.38 years and 53.6 percent of participants were women.

Among them, 48.6 percent were identified with diabetes distress.

The predictors that survived multivariable analysis are worth listing because several of them are not obvious:

• being female roughly doubled the odds
• a sedentary lifestyle raised them more than threefold, as did having complications
• a body mass index of 25 or more raised them about two and a half times
• two comorbidities roughly doubled the odds, and three or more raised them about three and a half times

The predictor that inverts expectation is duration. Having had the disease for less than ten years raised the odds of distress about two and a half times relative to having had it longer. Whatever the illness does to people over time, it does not make them more frightened.

Why the fear attaches to complications

In-depth qualitative interviews with a community-based sample of 74 African American, American Indian and white older adults with diabetes in the United States produced 63 identified fears, and they clustered tightly.

What people feared were complications that could stop them carrying out normal activities: amputation, blindness, low blood glucose and coma, and progression to insulin use and to dialysis. They did not fear diabetes in the abstract.

The consequence showed up in behaviour. Most of the participants organised their self-management around actions to prevent particular complications rather than around managing the disease as a whole. Their early experiences of the illness, often through other people, had focused their attention on the inevitability of complications and on how little a patient can do to prevent them, which is a belief that undercuts self-management before it starts.

The scale of the problem behind that is large. About 18.8 million people in the United States had been diagnosed with diabetes at the time of the study, half of them aged 65 or over, and heart disease is the most prevalent complication in that older group, causing three-quarters of diabetes-related deaths.

How fear of progression is measured

The third strand is fear of progression, the concern that a chronic disease will advance, which is known to affect mental health, social function and wellbeing across chronic illness generally. A multi-centre cross-sectional study published in December 2022 recruited inpatients with type 2 diabetes from the endocrinology departments of five tertiary hospitals in southwest China, enrolling 459 consecutively and analysing the 385 with complete data on a dedicated fear of progression questionnaire.

Three instruments, three countries, one subject that the phobia dictionaries record in four words. The gap between them is the point. A fear with a Greek name and no cases sits in a reference book, while the same fear, renamed and given a scale, turns out to be present in nearly half of an elderly sample and to be changing how people treat their own illness.