Online media has become a forum for heart-felt, first-hand accounts of what it’s like to live with Non-Verbal Living Disability (NVLD), an obscure, misunderstood neurological condition for which there is no clinical diagnosis. The personal stories of those with symptoms helps to validate the existence of their condition through the lived truths experienced. This Auto-Ethnographic study explores the question how might the researcher’s art practice support the NVLD community with a creative tool to convey their own lived experiences, and further, how can blog postings by the community offer insight and inspiration for the development of the tool? Narrative Inquiry is used as the primary method for data collection and analysis and the researcher acts as a proxy for the research subjects in the development of the visualized tool. The study reveals a range of common experiences from persons with NVLD and that these experiences are translatable into visual components (colour, shape, line etc.) that convey their lived experiences.