A suffering body, hidden away from others: The experience of being long-term bedridden with severe [ME/CFS] in childhood & adolescence, 2024, Krabbe +

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence
Silje Helen Krabbe; Wenche Schrøder Bjorbækmo; Anne Marit Mengshoel; Unni Sveen; Karen Synne Groven

In this article, we present findings from a qualitative study examining how young women experience being long‐term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long‐term bedridden from the vantage point of being fully or partially recovered.

Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone.

Based on our findings, we argue that the experience of being long‐term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

Link | PDF (Nursing Inquiry)

 

It does highlight that some patients are so severe that they cannot physically tolerate the presence of others even though mentally they feel isolated and feel the need to be with their loves ones.

I don't think this been highlighted in the scientific literature although it is a common issue in patient facebook groups.

 

Agree, at first I thought this was good. And then I realized she was assigning the pain of for example one woman seeing her brother as being a psychological toll and emotional pain of seeing someone she loved. Whereas it’s actually a physical component of PEM and of ME that severe patients find novel events, or emotional events cause a worsening of PEM. This is definitely due to sensory overload — it takes more energy to process, experience, react to or engage with a novel event. It’s is a physical response due to a lack of energy in the brain, it’s not just an emotional feeling of pain.

 

It is interesting that there is little discussion about the energy costs of novel or even less recent events. I can now fairly easily do an online grocery order but struggle to do simpler on line purchases from websites I am not familiar with, or I don’t usually need to use a walking stick (unless in PEM) in my garden even though it is not level, whereas I need to use a stick, even on very level ground, when out of my familiar home environment. Similarly, as @Braganca suggests, time in conversation with say my carer is much less demanding that with someone I don’t see very often regardless of how well I know that person or how relaxed I am with then.