"Invisible out-of-pocket healthcare expenses" (RACIDLS) refer to unreimbursed healthcare costs that are often not captured in statistical tracking systems but are perceived as necessary by users. This study aimed to estimate the amount and nature of these expenses among people living with a chronic illness, a disability, or a loss of independence who are involved in community networks.An online survey was conducted among 3,100 respondents, recruited through the France Assos Santé networks. A customized questionnaire, developed with the inter-organizational working group “Health Insurance,” collected self-reported data on unreimbursed expenses incurred over the past 12 months, as well as on associated care-avoidance behaviors. The average annual amount reported for RACIDLS was 1,560 euros, with a median of 640 euros. The most common expenses related to complementary medicine, small medical supplies, as well as nutrition and physical activity. Nearly 53% of respondents reported having foregone at least one non-reimbursed treatment or product, with this proportion reaching 69% among those with incomes below 2,000 euros per month.Although the sample is not representative, the results highlight expenses perceived as essential but overlooked in traditional indicators. They underscore the value of supplementing institutional approaches with mechanisms that take into account users’ reported experiences, in order to better understand inequalities in access to care.