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

,

Photo Credit: Pixabay

 

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.