Understanding lack of understanding : Invalidation in rheumatic diseases

The quality of life of patients with chronic rheumatic diseases is negatively influenced by symptoms such as pain, fatigue, and stiffness, and secondary symptoms such as physical limitations and depressive mood. On top of this burden, some patients experience negative responses from others, such as lack of understanding, disbelief, distrust, or being accused of exaggerating the symptoms and consequences of the disease. We call these negative responses of others ‘invalidation’. Invalidation might be due to the invisibility of symptoms for people in the social environment of the patient. Rheumatic diseases that lack objective physical or laboratory features or well-characterized pathologic findings to diagnose the illness, such as fibromyalgia, might especially provoke invalidation. However, little is known about the prevalence and consequences of invalidation as no adequate instrument exists to assess invalidation in patients with rheumatic diseases. Aim of this dissertation was to develop a questionnaire to quantify invalidation in patients with diverse rheumatic diseases and to determine its prevalence, associated variables, and consequences. First, the definition and structure of the concept ‘invalidation’ was studied. Patients described invalidation experiences as 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. Subsequently, this definition of invalidation was used to develop a questionnaire to measure invalidation, which we called the ‘Illness Invalidation Inventory (3*I)’. The 3*I assess invalidation from five different social environments: spouse, family, medical professionals, work environment, and social services. Patients with rheumatic diseases reported to experience more invalidation by social services, the work environment, and the family than by the spouse and medical professionals. Patients with the rheumatic disease, fibromyalgia, experienced more invalidation than patients with rheumatoid arthritis. Patients who experienced more invalidation had more severe symptoms, a worse mental wellbeing, and they were more often lonely. Emphasizing the perspective of the social environment, rheumatologists experienced little invalidation towards patients in general, but some did experience more invalidation towards patients with fibromyalgia than towards patients with rheumatoid arthritis. Spouses of patients with fibromyalgia and of patients with rheumatoid arthritis estimated the severity of the symptoms of their (patient) spouse fairly similar. This dissertation shows that invalidation can be a problem for patients with rheumatic diseases and especially for patients with fibromyalgia. Invalidation can have a negative effect on the quality of life of patients. It is therefore important to include invalidation in scientific research. Education about invalidation and its effects is important for patients as well as for people in the social environment of the patient. Future studies should focus on the causes and consequences of invalidation to be able to develop effective interventions.