Sarah Elizabeth McMillan MA MSW RSW

Uncertainty has been identified as central to the experience of being ill.

Those words are the opening line of a chapter in my master’s thesis from over a decade ago. My graduate research explored illness and sense of self or identity using autoethnography, a form of qualitative research and writing that systematically analyzes lived experience, connecting it to larger concepts and theories.

In this article I share and contrast some of my historical research and current reflections on the role of uncertainty in illness.

un·cer·tain·ty

Noun.

the state of being uncertain.

un·cer·tain

adjective.

not able to be relied on; not known or definite.

Oxford English Dictionary, 2024

If you live with chronic illness, or you love, work or spend time with someone who lives with chronic illness, you may already be familiar with how a sense of uncertainty shows up in your life. At the time of my original writing, I didn’t know there was a word for the experience that I had come to know for many years and this discovery felt ground-breaking for me.

My first brush with uncertainty concerning my illness (that I can remember) happened when I was ten years old and facing my first open heart surgery. I think it’s important to note that my parents first encounter with uncertainty and my illness likely began much much earlier than that. It wasn’t until my sociology of health and illness courses during my undergraduate degree, around age 21, that I learned there were theories, researchers and several areas of study that talked about what I experience/d yet didn’t have the words to name or fully describe.

Uncertainty in Illness Theory, pioneered by Mishel in 1988, recognized uncertainty as a cognitive state characterized by “the inability to determine the meaning of events”.  He believed that the inherently unpredictable nature of chronic illness meant that individuals likely would be left without a pre-existing cognitive schema to apply in the face of complex, ambiguous and unpredictable conditions.

Several other researchers (Brashers et al. 2006; Fife, 1994; Steward, 2003) described some of the ways uncertainty showed up for adults and children living with serious illness:

• how to interpret symptoms,
• seeking out what treatments are available and whether or not they will be effective,
• wondering how others may react to disclosure of illness,
• questions of how illness may affect long-term career relationships and family roles,
• anxiety and depression
• decrease in self-care

At the time, I was especially interested in how people with heart disease experienced uncertainty. I cited Reid and Clark (2002) who observed that many adults with heart failure were critically aware of any subtle fluctuations in their body as a way of continually assessing their health on a day-to-day basis.  I wrote about the very delicate balance of self managing your condition and coping with the mental anguish of an ever present sense of danger. Since I lived with a cardiac condition from birth, I could really relate to what I was learning and as a therapist I can know how common of a challenge health anxiety is for people with all kinds of illnesses.

In a related research paper I explored how my emergency heart surgery was an example of an event that I had no prior experience with. At the age of 10 I had never undergone surgery before, nor had I ever felt the extreme exhaustion of heart failure I was living with. Steward (2003) noted that in cases where unanticipated treatments or hospitalizations were needed, patients may experience additional insecurity at the shock and suddenness of the situation. I think it’s important for us to understand now how these experience can be reviewed from the lens of medical traumatic stress or medical trauma and ensure there is more support for patients and their families facing these strenuous circumstances.

I came across a analogy, the Sword of Damocles, that really struck me as I was first discovering research on uncertainty in illness. The sword, hanging over Damocles head by a thin strand, symbolizes the unremitting, pervasive threats of recurrence, death and late complications (Steward, 2003). This illustration stayed with me for along time and I was grateful to have a visual representation of how I sometimes felt. And there were also times where I wondered how the sword could be wielded differently.

In the original Roman parable, the presence of the sword rendered Damocles incapable of enjoying the rich feast and royal treatment he was being offered. With the advantage of more than a decade of experience and additional expertise, I think about this image now and remember the numerous times in life where we can experience two things at once. Deep love and horrendous pain. Sadness and joy. Guilt and relief. Though I still think it is a helpful imagine to express how we may feel in any given moment, it doesn’t represent the whole of a life lived with illness.

As much as I resonated with uncertainty as a sinister presence, at the time I was also intrigued by the research that viewed uncertainty from a different perspective. In a later piece Mishel (1990) himself reconceptualized Uncertainty in Illness Theory and claimed that the vague and amorphous nature of uncertainty means it can be perceived as either negative or positive. That when illness is viewed as an opportunity, coping mechanisms can allow for adaption to illness.

I wrote: Mishel’s (1990) position is problematic as it places the imperative on the individual to reconcile how they view their illness, laying judgement or blame and potentially bypassing or invalidating individuals’ fear and pain. I still think that conceiving of uncertainty as a binary, either positive (adaptive) or negative (maladaptive) is problematic. Focusing solely on the individuals ability to cognitively manage also ignores social, cultural and political influences that shape the way we experience, understand and respond to illness.

I remember feeling even more excited when I came across the following text.  In addition to the mental wrestling, comparing and expressing, the following showed me that theory and writing can be a vehicle for refute.  For redefining.  For thinking differently.  See what I mean below.

Honkasalo (2006; 2008) challenges the normative meaning of threat that researchers like Mishel attributed to uncertainty, pointing out that other traditions have explored how humans deal with indeterminacy in a lived context.  They maintain that fragility and unpredictability, which uncertainty is characterized by, is contextual and inherent to life itself.  That modern health research (as well as much of Western psychology and medicine) place such a strong emphasis on uncertainty as a threat or a target of control, that it is difficult to conceptualize uncertainty as a normal part of life or a life affirming experience. We can look to the concept of impermanence in Buddhism or to the cyclical nature of the seasons and the moon phases for reminders that change is the only constant.

I hope sharing some of these theories, insights and curremt reflections will be helpful for someone else, like it was for me when I first learned I could connect my experiences to larger concepts that other people also experienced. In many ways this form of research and writing was a therapeutic tool too and what I’ve learned from exploring them have stayed with me as I’ve navigated some very uncertain times.

For those moments I didn’t feel so alone.  It gave my mind something to grab ahold of, to grapple with, to compare and contrast.  To write about and to express.

Do the reflections above resonate with your experiences? What do you think is missing?

If you’d like support with handling uncertainty in your life then schedule a free discovery call to discuss your needs.

References

Andrews, E. What was the sword of Damocles? History.com. August 10, 2023.

Brashers, D. E., Hsieh, E., Neidig, J. L., & Reynolds, N. R. (2006). Managing uncertainty about illness: Health care providers as credible authorities. In R. M. Dailey & B. A. Le Poire (Eds.), Applied interpersonal communication matters: Family, health, & community relations (pp. 219-240). New York. Peter Lang.

Fife, B. L. (1994). The Conceptualization of Meaning in Illness. Social Science & Medicine, 38(2), 309 – 316

Honkasalo, M. L. (2006). Fragilities in Life and Death: Engaging in Uncertainty in Modern Society> Health, Risk & Society, 8(1), 27 – 41

Honkasalo, M. L. (2008). Enduring as a Mode of Living With Uncertainty. Health, Risk & Society 10.5 (2008): 491 – 503

Mishel, M. H. (198). Uncertainty In Illness. Journal of Nursing Scholarship, 20(4), 225 – 232

Mishel, M. H. (1990). Reconceptualization Of The Uncertainty In Illness Theory” Journal of Nursing Scholarship, 22(4), 256 – 262

Reid, M., & Clark, A. (2002). The active citizen works hard: Living With Chronic Heart Disease. In Henderson, S., Peterson, A. Eds. Consuming Health: the Commodification of Health Care London: Routeledge Press.

Steward, J. L. (2003). “Getting Used to It” : Children Finding the Ordinary and Routine in the Uncertain Context of Cancer. Qualitative Health Research. 13(3). P. 395 – 407.