Diagnosis Does Not Automatically Remove Stigma for Young People with Invisible Illness.

Abstract

Thank you for the invitation to comment on this interesting and important paper. As a pediatric rheumatologist and a pediatric psychologist, we meet many young people affected by invisible illnesses including juvenile idiopathic arthritis (JIA), amplified pain syndromes (APS), hypermobility-related conditions, and dysautonomia, among others. Wakefield et al. (2023) evaluated the experience of pain-related stigma in young people with JIA and their findings reveal several assumptions often made by the medical community which bear further discussion. We explore reasons the medical community may perceive that diagnosis “validates” symptoms and yet this may not affect a young person’s experience of stigma from their social environment. Further, recent research suggests that even for a well-understood pain-related pathophysiology like inflammatory pain in JIA, pain is an important treatment target and may not correlate as directly with disease activity as expected. Finally, we suggest that for young people experiencing painful invisible illness, lessons learned from the treatment of idiopathic chronic pain may provide support that minimizes impairment from symptoms and may even help the symptoms.