Mediating Pain: Navigating Endometriosis on Social Media

With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social m...

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Main Author: Eileen Mary Holowka
Format: Article
Language:English
Published: Frontiers Media S.A. 2022-05-01
Series:Frontiers in Pain Research
Subjects:
Online Access:https://www.frontiersin.org/articles/10.3389/fpain.2022.889990/full
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author Eileen Mary Holowka
author_facet Eileen Mary Holowka
author_sort Eileen Mary Holowka
collection DOAJ
description With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.
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spelling doaj.art-d042b8f7a9184897876405e99d4768d62022-12-22T00:19:29ZengFrontiers Media S.A.Frontiers in Pain Research2673-561X2022-05-01310.3389/fpain.2022.889990889990Mediating Pain: Navigating Endometriosis on Social MediaEileen Mary HolowkaWith the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.https://www.frontiersin.org/articles/10.3389/fpain.2022.889990/fullendometriosissocial mediaqualitativechronic paininformation-sharingpatient communities
spellingShingle Eileen Mary Holowka
Mediating Pain: Navigating Endometriosis on Social Media
Frontiers in Pain Research
endometriosis
social media
qualitative
chronic pain
information-sharing
patient communities
title Mediating Pain: Navigating Endometriosis on Social Media
title_full Mediating Pain: Navigating Endometriosis on Social Media
title_fullStr Mediating Pain: Navigating Endometriosis on Social Media
title_full_unstemmed Mediating Pain: Navigating Endometriosis on Social Media
title_short Mediating Pain: Navigating Endometriosis on Social Media
title_sort mediating pain navigating endometriosis on social media
topic endometriosis
social media
qualitative
chronic pain
information-sharing
patient communities
url https://www.frontiersin.org/articles/10.3389/fpain.2022.889990/full
work_keys_str_mv AT eileenmaryholowka mediatingpainnavigatingendometriosisonsocialmedia