Naming the Disease and Experiencing the Illness

The locked-in syndrome is defined by quadriplegia and loss of articulate speech with preservation of sensation, consciousness and cognition. It results mostly from brainstem stroke. Advanced amyotrophic lateral sclerosis (ALS) can lead to a similar locked-in state (LIS). Patients are able to communicate via blinking, and/or assistive technologies, and/or brain-computer interfaces. In the first investigation ever of persons from different cultures in LIS due to ALS (PLIS-ALS) vs. stroke (PLIS-stroke), members of the Anthropology and Phenomenology of the Locked-in Syndrome project I coordinate asked participants, “What do you think about the official name of the diagnosis (Locked-In Syndrome)?” and “Sometimes people with locked-in syndrome are described as a mind trapped in a body. What do you think about it? Why?”  PLIS-stroke found the name adequate and some accepted the trapped mind image. In contrast, most PLIS-ALS rejected both as inadequate. Their responses reflect diverging illness trajectories. PLIS-stroke endure sudden entrance into LIS and a period of quasi absolute “captivity,” from which they emerge gradually. PLIS-ALS experience the opposite, since ALS leads to an increasingly locked-in state. We thus documented the discrepancy between the name of the disease (the condition as approached by medicine) and the experience of illness (the condition as lived by affected individuals). The official nomenclature and the trapped mind image highlight losses (of speech and mobility), and symbolically lock patients into their deficits. However, insofar as locked-in persons can in fact communicate, albeit with help, they are neither literally locked-in, nor minds trapped in a body.  We recommend de-emphasizing locked-in terminology and coining a more purely descriptive name (as was done for the vegetative state, renamed unresponsive wakefulness syndrome). Current vocabulary negatively contributes to shape self-perceptions and how others apprehend the affected persons. A related article, on legally incapacitated locked-in individuals, documents the significance of foregrounding communicative possibilities and pursuing them as practicable outcomes.