Betwixt and between being healthy and ill: the stigma experienced by young adults with
phenylketonuria
Sammanfattning
Today most adults with phenylketonuria (PKU) have followed a protein restricted diet from early
infancy. This makes their disorder an invisible impairment which becomes visible only when food is
served. When adhering to medical advice in public, adults with PKU find themselves in a liminal
space, betwixt and between being medically ill and socially healthy. The affected adults may pass as
being ‘normal’ if they ignore medical advice and eat ordinary food. By doing this, they risk severe
neurological health consequences. Due to the rarity of this illness and limited knowledge regarding
the health consequences of dietary intervention in adulthood, implications of adult PKU can be
difficult to explain to others. Conscious stigma-handling strategies are therefore required. This
article, which is based on qualitative interviews, discusses stigma and management strategies in the
lives of eleven adults aged 20-30 with PKU.