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Stories of Liminality: Living with a Life-Threatening Illness

Last updated May 11, 2015

Approved by: Krish Tangella MD, MBA, FCAP

Monika

Having a life-threatening illness not only involves tests, doctor visits, and medications, but also living with the illness. Individuals in these circumstances experience liminality, a gray zone where experiences no longer fit into typical categories and where two opposite feelings (Eg. fear and fearlessness) can reside at once. It is a sort of paradoxical zone where patients are living but yet dying.


The word liminality has its origin in Latin and describes the ambiguity one feels in the middle of a ritual of transitioning from one status to another. An individual belongs to neither the status he has left nor to the one he is entering.

Having a life-threatening illness not only involves tests, doctor visits, and medications, but also living with the illness. Individuals in these circumstances experience liminality, a gray zone where experiences no longer fit into typical categories and where two opposite feelings (Eg. fear and fearlessness) can reside at once. It is a sort of paradoxical zone where patients are living but yet dying.

Purpose:

Stories of Liminality: Living with Life-Threatening Illness illustrates the findings of a narrative study of people with life-threatening illnesses. The purpose of the study was to gain understanding of their unique situation that is often difficult to speak of. Patients who were suffering from either chronic kidney disease (CKD), HIV/AIDS, and cancer were considered for this study because their risk of death is significant.

Findings:

Participants in the study had four interviews over the span of three years that lasted between 1.5 and 3 hours. All of the interviews were coded using NVivo software, and this thematic analysis uncovered four narratives of pervasive liminality that seemed consistent with the participants’ lives:

1.      Fear (lessness)

  • Fear comes from loss, suffering, and dying, which is always present in many participants
  • Fear was typically implied and not outwardly stated because these are frequently private stories associated with strong emotions
  • Interestingly, participants who were willing to share such raw emotions gained a feeling of fearlessness
  • Fear (lessness) was not always demonstrated with words. As noted by one participant,“We all think that articulation is the spoken word. It’s not—because for some people it’s painting; for some people it’s poetry; for some people it’s silence.”
  • Response to fear varies. The most effective method seemed to be taking charge and “getting on with their life.”

2.    Being alive but not living

  • There was a uniform theme in all the stories illustrating how the subjects completely focused on the disease and coping with the disease during the early stages of diagnosis. However, later if their illness stabilized they strongly desired to live their lives without the disease being the focal point
  • One cancer patient noted that she prepared herself to die but when she entered remission, she realized she had not prepared herself to survive
  • Despite not living, the patients still need to live, as one patient noted, “People who know they are dying still have to do things like the laundry; they still eat and drink if they can.”
  • Some described an urge to keep busy and accomplish all that they could, as one noted, “I try and cram everything in today . . . because I don’t know what tomorrow will bring.” At the same time, she questioned, “Am I in such a hurry that I’m missing out . . . if I could just slow down, I could appreciate things a lot better.”
  • Many of the patients described feeling changed by the illness, but wanting to carry on as always. A paradox in the grey zone of liminality, where they were not their disease yet, was part of them.

3.     The (in)visibility of disease

  • The (in)visibility refers to the struggle of determining how much of their illness and progress to make noticeable and to whom.
  • This (in)visibility struggle was particularly challenging when the patients had to share their life-threatening illness with others. Depending on the audience, their story can change.
  • One patient recounts how these conversations are strongly emotional, and he ends up comforting the listener
  • Researchers believe that it is important to keep the illness as invisible as possible; patients with this outlook seemed to go where they wanted and do what they wanted without the disease stopping them.

4.     Knowing and not knowing

  • Researchers refer to the early diagnostic stage as being intrinsically liminal due to the many uncertainties (e.g. waiting for test results, doctor findings) which leads to disorientation for many and a disbelief of their new reality
  • One patient narrates a visit to the doctor’s office following a recent observation of a cancerous breast lump and her doctor states “not to worry about it” and “come and see me in 6 months.”
  • This is a paradoxical situation, and the patients must decide whether or not to worry or some third option
  • Some responded by not thinking about the disease while others learned as much as they could
  • One narrative stated, “So if I knew nothing it would be better I think! (chuckling).”
  • Another stated,  “I think that the more you know, the more you understand, and it’s easier to accept the ailment.”

Conclusion

Understanding the liminality faced by patients with a life-threatening illness is important to learn how to guide patients through their treatment and remission. Improvements made in health care workers’ abilities to understand the liminality will allow them to acknowledge possibilities of conflicting emotions that occur at once. Such empathy can improve holistic nursing care, but more research in this field is required to further prepare health care workers.

Written by Monique Richards

Reference:

Bruce, A., Sheilds, L., Molzahn, A., Beuthin, R., Schick-Makaroff, K., Shermak, S. (2014). Stories of liminality: living with life-threatening illness. J Holist Nurs,32(1), pp. 35-43. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23926216

Reviewed and Approved by a member of the DoveMed Editorial Board
First uploaded: May 11, 2015
Last updated: May 11, 2015