(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS)

Phillips Tarryn; Rees Tyson

摘要

Abstract >Sufferers of medically unexplained conditions that are not observable in the clinic can experience multiple layers of invisibility: a lack of biomedical diagnosis; legal skepticism; political disinterest; and a loss of their prior social identity. For those with environmental sensitivities, this is compounded by literal hiddenness due to often being housebound. Drawing on an online survey of people with multiple chemical sensitivity, this article examines how the everyday experience of invisibility is mitigated by engaging with other patients online. Respondents used online forums to undertake various forms of “visibility work,” including attempts to crystallize their suffering into something recognizable medically, legally, and politically, and to reconstruct an identity considered valid and deserving—although the therapeutic potential of online support was contingent on intra‐group politics. This study demonstrates that online forums allow biomedicine's “invisible others” to struggle for alternative forms of recognition beyond the clinical gaze. </abstract> </span> <span class="z_kbtn z_kbtnclass hoverxs" style="display: none;">展开▼</span> </div> <div class="translation abstracttxt"> <span class="zhankaihshouqi fivelineshidden" id="abstract"> <span>机译：</span><Abstract XMLNS =“http://www.wiley.com/namespaces/wiley”type =“main”xml：lang =“en”> <title type =“main”>抽象</ title> >患者医学上没有观察到的药物不明显的病症可以体验多层隐形：缺乏生物医学诊断;法律怀疑;政治不感兴趣;并丧失他们的先前社会身份。对于那些环境敏感性的人来说，由于通常是家庭行时，这将通过文字隐藏性复杂化。本文介绍了对具有多种化学敏感性的人的在线调查，研究了如何通过在网上与其他患者与其他患者接触时，如何减轻无形的日常内容经验。受访者使用在线论坛进行各种形式的“可见性工作”，包括尝试将他们的痛苦结晶到医学，合法，政治上，并重建被认为有效和应得的身份 - 尽管在线支持的治疗潜力取决于内部政治。这项研究表明，在线论坛允许生物医生的“隐形他人”，以争取临床目光之外的替代形式的识别形式。</ p> </摘要> </span> <span class="z_kbtn z_kbtnclass hoverxs" style="display: none;">展开▼</span> </div> </div> <div class="record"> <h2 class="all_title" id="enpatent33" >著录项</h2> <ul> <li> <span class="lefttit">来源</span> <div style="width: 86%;vertical-align: text-top;display: inline-block;"> <a href='/journal-foreign-24723/'>《Medical anthropology quarterly》</a> <b style="margin: 0 2px;">|</b><span>2018年第2期</span><b style="margin: 0 2px;">|</b><span>共19页</span> </div> </li> <li> <div class="author"> <span class="lefttit">作者</span> <p id="fAuthorthree" class="threelineshidden zhankaihshouqi"> <a href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=Phillips Tarryn&option=202" target="_blank" rel="nofollow">Phillips Tarryn;</a> <a href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=Rees Tyson&option=202" target="_blank" rel="nofollow">Rees Tyson;</a> </p> <span class="z_kbtnclass z_kbtnclassall hoverxs" id="zkzz" style="display: none;">展开▼</span> </div> </li> <li> <div style="display: flex;"> <span class="lefttit">作者单位</span> <div style="position: relative;margin-left: 3px;max-width: 639px;"> <div class="threelineshidden zhankaihshouqi" id="fOrgthree"> <p>Department of Social InquiryLa Trobe University;</p> <p>Department of Social InquiryLa Trobe University;</p> </div> <span class="z_kbtnclass z_kbtnclassall hoverxs" id="zhdw" style="display: none;">展开▼</span> </div> </div> </li> <li > <span class="lefttit">收录信息</span> <span style="width: 86%;vertical-align: text-top;display: inline-block;"></span> </li> <li> <span class="lefttit">原文格式</span> <span>PDF</span> </li> <li> <span class="lefttit">正文语种</span> <span>eng</span> </li> <li> <span class="lefttit">中图分类</span> <span><a href="https://www.zhangqiaokeyan.com/clc/187.html" title="人类学">人类学;</a></span> </li> <li class="antistop"> <span class="lefttit">关键词</span> <p style="width: 86%;vertical-align: text-top;"> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=multiple chemical sensitivity&option=203" rel="nofollow">multiple chemical sensitivity;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=contested illness&option=203" rel="nofollow">contested illness;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=online support groups&option=203" rel="nofollow">online support groups;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=invisibility&option=203" rel="nofollow">invisibility;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=visibility work&option=203" rel="nofollow">visibility work;</a> </p> <div class="translation"> 机译：多种化学敏感性;有争议的疾病;在线支持群体;隐形;可见性工作; 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