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.

LAY ABSTRACT
Patient’s perception that the social environment does not recognize their medical condition may be defined as “invalidation”.
This study explores invalidation experiences among Swedish patients with chronic widespread pain with regard to a range of sociodemographic and health factors. Questionnaires, including the Illness Invalidation Inventory, were sent by post to a sample of patients with chronic widespread pain. Most of the respondents were women. Swedish patients with widespread pain experienced
invalidation to a large extent. The highest scores for invalidation were reported from contacts with social services, and the lowest from spouses. Being younger, having periodic pain, and having had more frequent visits to the doctor in the previous year were characteristics associated with higher invalidation scores. Experiences of invalidation were associated with worse mental health.
Pain management within rehabilitation must thus take the patient’s experiences of invalidation from the social environment into consideration as an important aspect.