New Study Identifies How Disbelief, Lack of Support Negatively Affects Fibromyalgia Patients

New Study Identifies How Disbelief, Lack of Support Negatively Affects Fibromyalgia Patients

Results from a recent study published in the journal Arthritis Care & Research indicate that the construct of invalidation as perceived by patients with fibromyalgia includes active negative social responses as well as a lack of positive social responses with respect to the patient and their condition. In this setting, the psychological “construct of invalidation” indicates the perception that a person with fibromyalgia does not really suffer from any real, physical illness.

Fibromyalgia is a chronic pain condition of unknown etiology. More than in other rheumatic diseases, in fibromyalgia the absence of pathologic evidence, observable deformity, and laboratory testing, as well as the inherent invisibility of its core symptom pain and other symptoms can cause disbelief about the legitimacy of fibromyalgia and may hamper the signaling of the person’s pain and physical disabilities to the environment. Although there is not a single good term to capture all of the components of this phenomenon, the term “invalidation” has been used to refer to a constellation of features that includes nonacceptance by others, misunderstanding, disbelief, rejection, stigmatization, and suspicion that the problem is exaggerated or psychological.

Understanding the impact of invalidation may help to improve fibromyalgia patients treatment by instructing society about fibromyalgia. Currently there is no official definition of the construct of invalidation. In this regard, in the study titled “Understanding the lack of understanding: Invalidation from the perspective of the patient with fibromyalgia,” Marianne Kool from tUtrecht University, Utrecht in the The Netherlands and her colleague applied a hierarchical cluster analysis to assess everyday invalidation experiences of patients with fibromyalgia.

Adult patients age ≥18 years who met the American College of Rheumatology criteria for fibromyalgia were interviewed about everyday invalidation experiences. The number of interviews was determined by the moment that no new topics emerged during at least 2 interviews, which resulted in 10 interviews. A total of 94 statements about invalidation that were derived from interviews and a card-sorting (Q-sort) technique provided the input for this cluster analysis.

Results from the hierarchical structure of invalidation revealed a higher-order distinction between statements reflecting “discounting” and “understanding.” Discounting was subdivided into the components “denying” and “patronizing” (consisting of “lecturing” and “overprotecting”). Understanding was subdivided into “supporting” and “acknowledging.” These higher-order constructs were further subdivided into 15 lower-order clusters that reflected cognitive, affective, and behavioral aspects of invalidation.

Based on these results, the researchers indicate in their study that the definition and structure of invalidation that includes active negative social responses (denying, lecturing, and overprotecting) as well as a lack of positive social responses (supporting and acknowledging) with respect to the patient and the condition of the patient. This definition of invalidation provides a basis to quantify invalidation and to study its impact on symptom severity, quality of life, health behavior, therapy adherence, therapy outcome, and other important aspects of fibromyalgia.

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