{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,30]],"date-time":"2026-10-30T00:12:15Z","timestamp":1793319135840,"version":"4.5.0"},"reference-count":26,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2025,8,11]],"date-time":"2025-08-11T00:00:00Z","timestamp":1754870400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,8,11]],"date-time":"2025-08-11T00:00:00Z","timestamp":1754870400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Chronic Illness"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To understand individuals\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We undertook in-depth interviews with (n\u2009=\u200925) individuals living with TN in the United Kingdom recruited via online forums. Data were analysed thematically.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Participants described the far-reaching impact of TN on their everyday lives, with their experiences broadly fitting into three overarching themes: \u201cenduring pain\u201d, \u201cavoiding pain\u201d and \u201ctreatment burdens\u201d. Taken together, these three overlapping experiences comprise what we term the \u201ctriple burden\u201d 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/17423953251350470","type":"journal-article","created":{"date-parts":[[2025,8,11]],"date-time":"2025-08-11T08:33:01Z","timestamp":1754901181000},"page":"457-466","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["\u201cIt's the worst pain I think you could ever have in the world\u201d: The experience of living with trigeminal neuralgia"],"prefix":"10.1177","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2989-096X","authenticated-orcid":false,"given":"Cameron","family":"Werner","sequence":"first","affiliation":[{"name":"Department of Psychology, Walbrook Institute London, London, UK"},{"name":"Department of Psychology, IU International University of Applied Sciences, Erfurt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7499-0439","authenticated-orcid":false,"given":"Marian","family":"Peacock","sequence":"additional","affiliation":[{"name":"Usher Institute, Medical School, University of Edinburgh, Edinburgh, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Lawton","sequence":"additional","affiliation":[{"name":"Usher Institute, Medical School, University of Edinburgh, Edinburgh, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,8,11]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-030-60687-9_21"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1177\/0333102416687280"},{"key":"e_1_3_3_4_2","first-page":"1","article-title":"Sex differences in patient journeys to diagnosis, referral, and surgical treatment of trigeminal neuralgia: implications for equitable care","volume":"1","author":"Hung PS-P","year":"2022","unstructured":"Hung PS-P, Byeon AG, Noorani A, et al. Sex differences in patient journeys to diagnosis, referral, and surgical treatment of trigeminal neuralgia: implications for equitable care. J Neurosurg 2022; 1aop: 1\u20139.","journal-title":"J Neurosurg"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(20)30233-7"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10072-008-0923-4"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12875-025-02763-8"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1097\/j.pain.0000000000000853"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.2147\/JPR.S331036"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1080\/14737175.2017.1370375"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00701-015-2515-4"},{"key":"e_1_3_3_12_2","first-page":"56","article-title":"They could have cut my head off and I wouldn't have cared\"\u2014A qualitative study of patient experiences and the impact of trigeminal neuralgia","volume":"36","author":"Venda Nova C","year":"2022","unstructured":"Venda Nova C, Zakrzewska JM, Ni Riordain R, et al. They could have cut my head off and I wouldn't have cared\"\u2014A qualitative study of patient experiences and the impact of trigeminal neuralgia. J Oral Facial Pain Headache 2022; 36: 56\u201367.","journal-title":"J Oral Facial Pain Headache"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.ep11339939"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.6996.42"},{"key":"e_1_3_3_15_2","article-title":"Advantages and disadvantages of four interview techniques in qualitative research","volume":"7","author":"Opdenakker RJG","year":"2006","unstructured":"Opdenakker RJG. Advantages and disadvantages of four interview techniques in qualitative research. 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