“A young person in an old person’s body”: a reflexive thematic analysis of the experience of living with young onset Parkinson’s disease

Background: People with young-onset Parkinson’s disease (YOPD), a term for those diagnosed with Parkinson’s disease (PD) under the age of 60, face unique challenges compared to those diagnosed with PD later in life. A better understanding of the lived experience of those with YOPD is essential to delivering bespoke rehabilitation and improving quality of life. Purpose: To provide insight into the emotional and social lived experience of individuals with YOPD. Method: Semi-structured interviews were completed with twelve adults diagnosed with YOPD, aged between 30 and 59. Reflexive thematic analysis was used to analyse the data. Results: Three major themes were developed: Theme 1: “I’m not drunk or stupid, I’m just a young person with Parkinson’s”: A daily dose of stigma; Theme 2: “I often feel like I’ve done something wrong, like I am wrong”: The heavy weight of shame; and Theme 3: “I was mourning my future, it felt like a death”: Grieving what has been, and what will be, lost. Conclusion: Grief and social stigma can result in shame and self-criticism in YOPD. Implications for healthcare professionals include the recommendation to routinely offer psychological support for individuals living with YOPD. Awareness campaigns about YOPD are needed to reduce stigma.