Chronic illness of the temporomandibular joints as experienced by support-group members

For temporomandibular disorders, the clinical situation is one of considerable etiologic, diagnostic, and therapeutic uncertainty. Using interview data, this report describes this condition and the search for care from the perspective of sufferers who are support-group members.

Thirty-two individuals participated; all were members of a support group for individuals with long-term problems attributed to the temporomandibular joints and/or the surrounding masticatory muscles. Using a structured, open-ended interview format, this study investigated how individuals understand and give meaning to their symptoms, their patterns of care seeking, and the consequences of the illness on their lives. The participants also completed several structured questionnaires.

For these support-group members, symptoms extended beyond the jaw and surrounding area, with extensive musculoskeletal involvement and resulting dysfunctions that have far-reaching consequences for the sufferers' lives. Primary care physicians are often consulted, especially early in the illness history. They also provide ongoing care and are asked for guidance when patients seek specialized treatment. A striking aspect of the findings from the interviews is the complex and costly pattern of health care seeking. This extended search for effective treatment is examined with reference to culturally based understanding, shared by patients and clinicians, about the nature of illness.