The Narratives that Shape Illness

28 May

Article posted on the Psychosynthesis Trust in April 2026.

Monica Zenonos explores how narratives around chronic pain and illness can allow patients to reclaim their own voice, ahead of her upcoming CPD workshop on the subject.

This brief blog argues that illness and health are key elements of intersectionality, shaped by cultural and historical contexts. Our understanding of illness is not formed in a vacuum but by an interplay of personal, cultural, psychological and historical forces that mould how we understand what is happening .and how we shape our personal narrative. This then shapes and expresses a new sense of identity.[1][2]

In pre-modern times, illness was often understood in holistic or symbolic ways—linked to spiritual forces, moral meanings, or communal experience. Illness was often attributed to the evil eye, the will of God, superstition and as punishment for past sins. In fact the word ‘pain; comes from ‘poena’ meaning punishment.[3][4]

With the rise of modern medicine, a new narrative took hold: one centred on biology, pathology, and technical expertise. Illness became something to diagnose, measure, and treat. Doctors became authorities. Patients became cases. Language played a crucial role in this shift. Medical terminology created clarity, but also distance. It reinforced a hierarchy in which professional knowledge often overshadowed personal experience. It colonised the patient making the body its own newly conquered territory.[5][6]

In this framework, the patient’s story can become secondary, filtered, reshaped, or even silenced to fit the dominant medical narrative.[7]

Reclaiming the Patient’s Voice

Today, we live in a more complex, postmodern landscape where multiple narratives coexist. Medical expertise remains essential, but there is growing recognition that it does not capture the full experience of illness.[8]

When people begin to sense that their story extends beyond medical charts and diagnoses, something shifts. They start to seek meaning, to reconstruct identity, to articulate what cannot be measured.[9]

This is where personal narratives—through conversation, therapy, writing, or reflection—become powerful. They allow individuals to reclaim their voice and reassert the validity of their lived experience.[10][11]

And yet, power imbalances persist.[12]

In many clinical interactions, the medical narrative still dominates. Questions that fall outside its framework may be gently redirected—or quietly shut down.[13]

I recall, during chemotherapy, asking what might happen if the treatment didn’t work. The question came from curiosity, not despair. But the response was immediate: ‘stay positive, don’t think about that.’

So, I smiled. And I said nothing.

In that moment, the conversation closed. The deeper question remained— it had no space to exist.

Embracing Uncertainty in Therapeutic Practice

Exploring the narrative of pain and illness opens the work and encourages a radical shift that is not toward more answers, but toward greater tolerance of uncertainty.[17]

It is often a challenge to sit with uncertainty and allow difficult questions to remain unresolved. This process can be uncomfortable, as it may evoke the therapist’s own unresolved issues. Yet, acknowledging and exploring fear and anxiety not as problems to be immediately fixed, but as experiences to be understood, is vital.[18]

Importantly, fear and anxiety are not solely the responsibility or burden of the patient or client. Within medical discourse, these feelings are frequently pathologized by focusing solely on the individual. However, a richer understanding emerges when they are considered within the broader context of society, family, friends, personal and professionals working with the client/patient. Rather than reducing fear and anxiety to clinical symptoms, it is essential to recognise their place within the interconnected web of relationships and social environments.[19]

This does not mean abandoning medical treatment or practical strategies. It means expanding the frame—making room for both action and reflection, both science and story.[20]

Because sometimes, illness is not something to silence or control.

Sometimes, it is something to listen to.

And sometimes, “some things just happen”—but what we make of them, how we live with them, and the stories we tell about them, can make all the difference.

References

Crenshaw, K. (1989). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics.
Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition.
Porter, R. (1997). The Greatest Benefit to Mankind: A Medical History of Humanity.
Jackson, M. (2001). Pain: A Cultural History.
Foucault, M. (1973). The Birth of the Clinic: An Archaeology of Medical Perception.
Good, B.J. (1994). Medicine, Rationality, and Experience: An Anthropological Perspective.
Frank, A.W. (1995). The Wounded Storyteller: Body, Illness, and Ethics.
Charon, R. (2006). Narrative Medicine: Honoring the Stories of Illness.
Mattingly, C., & Garro, L.C. (2000). Narrative and the Cultural Construction of Illness and Healing.
Broyard, A. (1992). Intoxicated by My Illness: And Other Writings on Life and Death.
Hydén, L.C. (1997). Illness and Narrative.
Wendell, S. (1996). The Rejected Body: Feminist Philosophical Reflections on Disability.
Mishler, E.G. (1984). The Discourse of Medicine: Dialectics of Medical Interviews.
Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition.
Kearney, M. (1996). Mortally Wounded: Stories of Soul Pain, Death, and Healing.
Wilkinson, R.G., & Marmot, M. (2003). Social Determinants of Health: The Solid Facts.
Charon, R. (2006). Narrative Medicine: Honoring the Stories of Illness.
Frank, A.W. (2013). The Wounded Storyteller: Body, Illness, and Ethics (2nd Edition).
Broyard, A. (1992). Intoxicated by My Illness: And Other Writings on Life and Death.
Mattingly, C., & Garro, L.C. (2000). Narrative and the Cultural Construction of Illness and Healing.