“It’s the worst pain I think you could ever have in the world”: the experience of living with trigeminal neuralgia

Objectives: To understand individuals’ experiences of living with, and attempting to manage, trigeminal neuralgia (TN), a rare neurological disorder characterised by sudden episodes of intense, incapacitating unilateral facial pain.

Methods: We undertook in-depth interviews with (n=25) individuals living with TN in the United Kingdom recruited via online forums. Data were analysed thematically.

Results: Participants described the far-reaching impact of TN on their everyday lives, with their experiences broadly fitting into three overarching themes: “Enduring pain”, “avoiding pain” and “treatment burdens”. Taken together, these three overlapping experiences comprise what we term the “triple burden” of TN; namely, the burden and assault to self, arising from being in intense and intractable pain, the burden and loss of self-identity resulting from avoiding pain triggers; and, the additional burden resulting from having to balance pain relief with severe medication side effects.

Discussion: Living with TN can be a highly disruptive and distressing experience because TN pain and the strategies people employ to try to avoid triggering it can assault and undermine their self-identities and sense of self-worth. We argue that applying sociological concepts, such as Bury’s work on biographical disruption, may help to shed light on people’s lived experiences of TN and inform the care and support provided to them.