Objective:

To understand the barriers to the expression of suffering, found by some people with multiple sclerosis treated at the Instituto Neurológico de Colombia [Neurological Institute of Colombia] in Medellin.

Materials and Method:

Study based on a constructionist and hermeneutic paradigm, with a polyphonic type narrative approach in which, during 2015 and 2016, five people with multiple sclerosis, two of their caregivers, and two treating professionals were interviewed in depth. A polyphonic narration was constructed for each participant, their life histories were analyzed, and stories were extracted in which social and personal demand to hide their suffering is visible.

Results:

In these stories a constant period of strength to difficulties was evidenced and a tendency to show that they can continue doing their daily activities as they did before getting sick despite the increase in disability. This is as well evident in the stories of their caregivers, who also hide their feelings and the exhaustion generated by the caring work.

Conclusions:

These requests for strength may be due to the contemporary tendency to overvalue personal tenacity and to constantly seek welfare and happiness, which entails a demand of showing themselves as capable individuals at all times. Given this situation for those having disabling conditions such as multiple sclerosis, it is expected that they become an example of overcoming adversity, which reflects a cultural rejection to suffering and to accept human fragility. This situation can become a stigma towards people with multiple sclerosis.

        · resumen en Español | Portugués     · texto en Español     · Español ( pdf )