Stigma, Unspeakable Dilemmas, and Somatic Symptoms — a Legacy of Suffering in CFS/ME and Fibromyalgia

Abstract

Chronic fatigue syndrome (CFS) and fibromyalgia are both illnesses for which suffering is amplified by stigmatisation. People with these illnesses often feel judged, devalued, marginalised, or discriminated against by employers, family members, friends and, most of all, health care professionals. Stigma often contributes to social alienation, loneliness, and feelings of entrapment that have been described as an ‘unspeakable dilemma.’ Managing stigma effectively begins by ascertaining which stigmatising processes are involved. These include: (1) moral stigma in which the symptomatic patient is perceived as characterologically lazy or unwilling to accept responsibilities; (2) disruption stigma in which the patient’s symptoms are perceiving as interfering with the effective functioning of the family or work group; (3) stigma from empathy fatigue in which the patient’s symptoms are regarded as requiring too much ‘emotional work’ by others who then distance themselves; (4) internalised stigma in which a patient has learned from external society to view oneself internally through a judgemental, contemptuous, and dismissive lens.