Facing Invalidation: A Further Challenge when Living with Chronic Widespread Pain

Abstract

Objective: The concept of "invalidation" refers to the patient's perception that the social environment does not recognize their medical condition. This study explores and describes invalidation experiences among Swedish patients with chronic widespread pain with regard to sociodemographic and pain characteristics, impact of pain, self-reported health, and symptoms of anxiety and depressive.

Methods: A cross-sectional design using questionnaires, including sociodemographic and pain variables, the Illness Invalidation Inventory (Likert scale items regarding 5 sources), the Hospital Anxiety and Depression Scale, and the Short-Form General Health Survey. Descriptive and univariate analyses were applied.

Results: Of the 152 respondents, 91% were women. Swedish patients with chronic widespread pain experienced invalidation to a large extent from all sources. The highest scores for invalidation were reported from contacts with social services (68%), and the lowest from spouses (30%). Being younger (p < 0.006), having periodic pain (p = 0.011), and having had more frequent visits to a doctor in the previous year (p = 0.007) were characteristics associated with higher invalidation scores. Experiences of invalidation were associated with worse selfreported mental health scores (r = -0.29 to -0.46).

Conclusion: Since patients with chronic widespread pain frequently experience invalidation from the social environment, this further challenge in daily life must be taken into consideration in pain management within multimodal pain rehabilitation.

Fig. 1

Percentage (%) of patients who experienced discounting and lack of understanding from the 5 sources “never/rarely”, “sometimes” and “often/very often” according to the Illness Invalidation Inventory (3*I).