Le rétablissement dans le contexte des maladies somatiques – co-analyses de parcours de vie traversés par le VIH et le lymphœdème

Abstract

Context and issues

Particularly deployed in the context of persistent psychological disorders, recovery as a personal process of redefining oneself and re-engaging in a positive life dynamic, despite residual symptoms, seems entirely worthy of being introduced into the field of treating somatic illnesses, and especially when they are chronic. Practices focused on the individual's future are being developed in somatic medicine departments, but the concept of recovery has yet to really find its place in psychiatry. In the field of psychiatry, recovery is a hopeful prospect, but could not it also be the case for people living with “visible” chronic somatic illnesses such as lymphedema, or “invisible” ones such as HIV infection?

Methodology

To illustrate the appropriateness of the concept of recovery in the field of chronic somatic diseases, we questioned two people directly concerned: Mrs. NR, who suffers from lymphedema of the leg, and Mr. YF, who is living with HIV. After recounting their respective backgrounds, drawing on their experiences and experiential knowledge, NR and YF were invited to discuss how the concept of recovery might or might not resonate with them, and what interest they felt it might hold for people living with chronic somatic illnesses. These exchanges were the subject of a collaborative analysis.

Results

With the onset of the disease, NR and YF spoke of coming face to face with vulnerability, and death for YF, in the eyes of others, as well as a change in the way they viewed their own bodies and themselves more generally. It should be noted that they were both diagnosed with cancer during their lives, NR before the diagnosis of lymphedema (the treatment of the former having caused the latter), and YF after the diagnosis of HIV. Various factors helped them on their respective journeys: family support and a return to study for NR, the positive visualization technique and therapeutic patient education for YF, meeting other people living with the same disease, having associative responsibilities and engaging in peer-help and partnership. YF and NR describe a very gradual period of personal, non-linear self-reconstruction, during which they learned a great deal, they explain, particularly on a human level. Despite the persistence of symptoms, NR no longer feels “ill” today. YF and NR describe feeling they are in a “new equilibrium”.

Discussion

In NR's and YF's respective life courses, we can identify the key dimensions of recovery – grouped together under the acronym CHIME, in reference to the work of Leamy et al. in 2011 – in the context of psychological disorders: connection to others, hope and optimism, identity, meaning in life, and empowerment. It would be relevant to account for perhaps more specific dimensions of recovery in the context of somatic illnesses in general, and more specifically in relation to the chronicity or remission of symptoms. The return to a new equilibrium by taking a non-linear, personal path, as described by NR and YF, is in keeping with the definition of this concept in the field of psychological disorders. Their comments serve as a reminder of the importance of taking care not to shift into an injunction to recover, or into a normalization of this subjective process. In addition, the role played by associative involvement, peer support and training, and even by caregivers, in NR and YF's path to recovery, invites us to explore the question of peer support in the context of somatic illnesses as well as mental disorders.

Conclusion

Our analysis of the experiential journeys of people living with a chronic physical illness (HIV or lymphedema) and who have also had illnesses for which they are in remission (cancers), demonstrates the relevance of deploying the concept of recovery in the field of somatic illnesses without reserving it solely for that of psychological disorders. This conclusion encourages the development of research and follow-through action in the hospital and voluntary sectors, involving those directly concerned. A vector of hope for people diagnosed with a psychic or somatic illness, recovery deserves to be part of the training of everyone involved in the care of disabling illnesses. Let's work to ensure that institutional choices do not hinder this personal process, but support its emergence, by placing the future of the person – and not just that of the symptoms – at the heart of care practice.