Unmet medical care needs in persons with multiple chemical sensitivity: A grounded theory of contested illness

Abstract

We interviewed nineteen persons with self-reported multiple chemical sensitivities in order to explore medical care access and use for this population with a "contested" illness. Interviews were analyzed using grounded theory in the tradition of Glaser, via incident, focused, and theoretical coding. We named the core category health quest (resisting annihilation) and construed four categories that embody the essence of this quest: illness as omnipotent, bidding for access, standard protocols irrelevant, and transcending hegemony. The categories suggest that mainstream medicine is unprepared to care for this population, that standard interventions are ineffective but used regardless, and that persons feel that they must survive on their own outside of the structured medical care system. In fact, most informants avoided medical care unless faced with an emergency. Results are discussed in terms of the need to recognize and understand this health problem.

Experiences of persons with multiple chemical sensitivity with mental health providers

“…Koch et al would like rehabilitation counselors to challenge their own biases toward MCS, revise their understanding of universal design, accommodations, and accessibility, and learn to help clients to communicate with their work supervisors and erode their psychosocial isolation. 77 Recently, Gibson et al 78 found, in a grounded theory study, that the core activity of participants, “Healthquest”, was literally a euphemism for “Resisting Annihilation”, given the tremendous obstacles to seeking medical treatment for persons with MCS. In this study, respondents reported wanting their counselors to understand in detail the triggers, symptoms, and lifestyle requirements of those with MCS, to learn some toxicology, to understand how some psychological conditions such as depression and anxiety can be either toxin-induced or secondary reactions to the lifestyle restrictions, to apply the principles of doing good therapy to this population of disabled people, and to make it a priority to provide an accessible office.…”

Access to Community Based Advocacy Services for Persons with Multiple Chemical Sensitivity

“…Access is often poor (Gibson, 2010) making it difficult for persons to use the services of physicians, libraries, parks, and even education. Healthcare needs are often unmet (Gibson, Leaf, & Komisarcik, 2016;Gibson, Kovach, & Lupfer, 2015), and even social workers who regularly work with this population have been shown to be unaware of the needs of these clients (Doiron, 2007). disabilities is necessary before system-wide independent living interventions can be developed through centers for independent living, public health departments or other state-wide agencies involved in implementing disability policy" (p. 325).…”

The Impact of COVID-19 Health Measures on Adults With Multiple Chemical Sensitivity: Cross-Sectional Study

“…Existing scientific literature describes aspects of health, social and economic functioning of PEMCS [25][26][27][28][29]. A recurrent theme that emerges is the invisible and complex nature of chemical sensitivities, which makes it difficult to explain to friends or colleagues, and which is often contested by healthcare providers [30]. As a result, PEMCS can be reticent to ask for accommodations for their condition as their symptoms may be trivialized or discounted entirely.…”