We are the canary in a coal mine - Establishing a disease category and a new health risk

This paper analyses the process of establishing a risk object – electromagnetic fields (EMF) – to examine risk categorisation as such and how individual and collective attempts to establish a new risk interact with health policy. We study people who claim to suffer from electrohypersensitivity (EHS). We conducted participant observation and repeated interviews with 18 EHS sufferers and interviewed representatives of ‘patient’ organisations and health policy-makers in the Netherlands. In their attempts to trace particular outcomes (EHS) to a specific risk factor (EMF), we observed EHS sufferers assembling complaints and complainants into a single illness category, distinguishing ‘real’ from ‘fake’ cases, and turning to measurement and experiments to show that others are at risk. Although EHS sufferers mimic scientific practices, they have thus far failed to have their illness recognised. To non-sufferers, EHS remains a psychosomatic condition. This entails a dual failure for EHS sufferers: they suffer from medically unexplained symptoms while identifying with a politically and medically unrecognised label. This very failure, however, provides perceived legitimacy for political activism: while they have failed to establish EMF as a risk, their suffering is increasingly recognised. This partial recognition, we argue, is an attempt to depoliticise the issue.