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Americans with disabilities and chronic illness or injury tend to be in poorer health, use more health services, and pay more for healthcare than those without disabilities. Consequently, their lives can be profoundly affected by federal and state health policies. The concerns of this population do not figure prominently in national health policy discourse and related public health and health services research efforts. This study sought to give voice to the lived experiences of people with disabilities as they navigate a fragmented U.S. healthcare system. We interviewed 30 adults who self-identified as having a disability and spoke or otherwise communicated in the English language. Directed content analysis was used to examine words and phrases in professionally transcribed documents by experienced qualitative researchers. We report and discuss four themes from the perspective of the participant, presented in thematic statements, related to vocation, finances, stressors, and advocacy.Points of InterestIt is critical to include people with disabilities and chronic illness or injury in national conversations about health policy because their lives can be greatly affected by it.The current definition of disability and models to explain thinking about disability are widely contested and debated by people with disabilities.Americans with disabilities desire to have a fulfilling work life, but find it hard to maintain full time regular employment due to a lack of insurance.American people with disabilities live with constant financial pressure and may not enjoy the retirement that others imagine for themselves.Navigating various insurance programs results in a great deal of stress for Americans with disabilities. It is critical to include people with disabilities and chronic illness or injury in national conversations about health policy because their lives can be greatly affected by it. The current definition of disability and models to explain thinking about disability are widely contested and debated by people with disabilities. Americans with disabilities desire to have a fulfilling work life, but find it hard to maintain full time regular employment due to a lack of insurance. American people with disabilities live with constant financial pressure and may not enjoy the retirement that others imagine for themselves. Navigating various insurance programs results in a great deal of stress for Americans with disabilities.

Disability stories: personal perspectives of people with disabilities on navigating the U.S. health system