Type 1 diabetes mellitus (T1D) is an autoimmune disorder characterized by a complete deficiency in insulin due to the destruction of pancreatic beta cells. Globally, T1D accounts for nearly 5-10% of the total diabetes cases. Living with this life-long condition has a significant emotional, psychological, physical, mental, and social impact. Despite extensive research characterizing the underlying physiology of T1D, additional work is needed to address the psychosocial aspects associated with the condition and its effect on the quality of life (QoL) of people living with T1D. One area that warrants further exploration is the stigma-related stereotypes and prejudice of people living with T1D experience in real-life settings. Despite the acknowledgment of stigma for conditions such as obesity, mental illness, and epilepsy, its association with T1D and ensuing psychological distress remains relatively under-investigated. Health-related stigma is a huge barrier to seeking appropriate, timely support for enhanced healthcare management and engagement in such patients. Here, we provide the perspectives of an adult with over 33 years of living with T1D and an expert endocrinologist who details their experience of T1D-related stigma. The self-reported factors explored by the person living with T1D include (but are not limited to) blame, mockery of the condition/person, diabetes-related shame, exclusion, rejection, negative judgments, fear, stereotyping, and discrimination. The lived experience supported by the clinical insights of the endocrinologist highlights the urgent need to decipher the severity, extent, nature, determinants, and consequences of stigma faced by a person living with T1D. Raising societal awareness, increasing education for caregivers, access to counseling for people living with diabetes, and engaging in shared decision-making remain the path forward.
Keywords: Depression; Diabetes-related shame; Patient experience; Psychological distress; Quality of life; Stigma; Type 1 diabetes mellitus.
© 2024. The Author(s).