Currently, there is a relative research lacuna in phenomenological research into the lived experience of motor neurone disease. Based on a sociological research project in the UK, involving 42 participants diagnosed with MND, this article explores the potential of a phenomenological sociology for analysing experiences of this drastically life‐limiting neurological disorder. Calls have been made for sociological researchers to analyse more fully and deeply the sensory dimension of the lived body, and this article also contributes to this newly developing body of literature. While the social sciences have been accused of a high degree of ocularcentrism, here we take forward the literature by specifically focusing upon the haptic dimension, given that touch – and particularly the loss of key elements of the haptic dimension– emerged as salient in MND patients' accounts. To illustrate the potential of our phenomenologically inspired theoretical perspective, we consider two specific haptic themes: (i) being out of touch: the loss of certain forms of touch within MND and (ii) unwelcome touch by medical staff.