Literature DB >> 17716794

The passing dilemma in socially invisible diseases: narratives on chronic headache.

Cristina Lonardi1.   

Abstract

This contribution concerns the experience of chronic diseases and how it disrupts the trajectory of a person's biography, undermining his/her identity, self-reliance and social relationships. The study focuses particular attention on those diseases which have not yet been fully acknowledged and can, therefore, be considered a socially invisible disease: chronic headache is one of these. Thirty-one life stories were collected from patients attending a specialized headache centre in Northern Italy, and selected in order to include all common varieties of chronic headache. Following the principles of grounded theory, interviews began by adopting a minimal theoretical framework which consisted of asking people how they became aware of the objective (disease), subjective (illness) and social (sickness) aspects of their condition. The analysis highlighted particular points in the patients' life trajectories: first, the biographical disruption that takes place because of the disease; second, how people succeed or fail in identity negotiation, which is vital for developing an acceptable social representation of the disease. Results show that patient's choices follow a vicious circle, where a partial social representation of the disease is produced. People who suffer from chronic headache face a dilemma in social relationships: should they conceal their disease, or make it evident? If they conceal, any possible social representation of the disease is denied, which could lead to carrying the burden of the disease alone, with no social support. On the other hand, making chronic headache visible could result in stigma.

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Year:  2007        PMID: 17716794     DOI: 10.1016/j.socscimed.2007.07.007

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  8 in total

1.  Patients with tension-type headaches feel stigmatized.

Authors:  Sanjay Prakash
Journal:  Ann Indian Acad Neurol       Date:  2016 Jan-Mar       Impact factor: 1.383

2.  Working-age adults' perspectives on living with persistent postural-perceptual dizziness: a qualitative exploratory study.

Authors:  Ann Elisabeth Ignace Sezier; Nicola Saywell; Gareth Terry; Denise Taylor; Nicola Kayes
Journal:  BMJ Open       Date:  2019-04-01       Impact factor: 2.692

3.  Patients' and Health Care Workers' Perception of Migraine Images on the Internet: Cross-sectional Survey Study.

Authors:  Bianca Raffaelli; Pia Kull; Jasper Mecklenburg; Lucas Hendrik Overeem; Elisabeth Storch; Maria Terhart; Lars Neeb; Uwe Reuter
Journal:  J Med Internet Res       Date:  2021-11-12       Impact factor: 5.428

Review 4.  Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected.

Authors:  Patricia A Fennell; Nancy Dorr; Shane S George
Journal:  Healthcare (Basel)       Date:  2021-05-09

5.  Development of a questionnaire specifically for patients with Ileal Orthotopic Neobladder (IONB).

Authors:  Salvatore Siracusano; Mauro Niero; Cristina Lonardi; Maria Angela Cerruto; Stefano Ciciliato; Laura Toffoli; Francesco Visalli; Davide Massidda; Massimo Iafrate; Walter Artibani; Pierfrancesco Bassi; Ciro Imbimbo; Marco Racioppi; Renato Talamini; Carolina D'Elia; Giovanni Cacciamani; Davide De Marchi; Tommaso Silvestri; Paolo Verze; Emanuele Belgrano
Journal:  Health Qual Life Outcomes       Date:  2014-09-01       Impact factor: 3.186

Review 6.  The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.

Authors:  Vivien P Nichols; David R Ellard; Frances E Griffiths; Atiya Kamal; Martin Underwood; Stephanie J C Taylor
Journal:  BMJ Open       Date:  2017-12-15       Impact factor: 2.692

7.  Passing Strategies and Performative Identities: Coping with (In)Visible Chronic Diseases.

Authors:  Tanisha Jemma Rose Spratt
Journal:  J Med Humanit       Date:  2022-03

Review 8.  Stigma and Migraine: Developing Effective Interventions.

Authors:  Simy K Parikh; Joanna Kempner; William B Young
Journal:  Curr Pain Headache Rep       Date:  2021-12-06
  8 in total

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