Meeting The Patient’s Experience of Illness and Society’s Response

Faculty of Medicine, University of Ljubljana, Slovenia

Professor Zvonka Zupanič Slavec, Head of virtual department of history of medicine and medical humanities, organized a meeting bringing together medical students, patients, physicians, and representatives of patient associations. The meeting offered insight into different experiences of illness and disability, including rare diseases, traumatic injuries, dementia, atopic dermatitis, and autism. Each of these experiences revealed a different dimension of human vulnerability and raised questions extending beyond medicine itself—questions of meaning, dignity, solidarity, and justice.

In her introductory remarks, Professor Zupanič Slavec emphasized that illness is a biopsychosocial phenomenon that cannot be understood solely through biomedical categories. The patient’s subjective experience is an essential component of treatment, as effective care must take into account how patients experience their condition and the broader context of their lives. She also stressed that society’s response to illness is a responsibility shared by all of us, reflecting the extent to which a community is prepared to acknowledge vulnerability and support those facing illness and hardship.

Traumatic Injury: The testimonies concerning traumatic injuries opened a world of sudden disruption, in which a person can be abruptly removed from a sense of safety and confronted with pain, uncertainty, and the need to rebuild their life and identity. An injury is not merely an event affecting the body; it can also represent an existential rupture affecting multiple dimensions of a person’s life.

The personal accounts of mountaineer Miha Žumer, physician Tonč Žunter, and Dane Kastelic, President of the Slovenian Paraplegic Association (Zveze paraplegikov Slovenije), illustrated the multifaceted nature of trauma and its physical, psychological, and social consequences.

Autism: The testimony of a person with autism, together with the perspective of a mother of an autistic person and Maja Weiss, President of ASPI, the Association for the Support of Adolescents and Adults with Autism (Društvo za podporo mladostnikom in odraslim z avtizmom), introduced students to a world shaped not primarily by physical pain but by a different way of perceiving and experiencing the environment.

Their accounts emphasized the importance of understanding autism not simply in terms of deficits, but as a different way of experiencing and interacting with the world—one that calls for patience, understanding, accommodation, and respect. People on the autism spectrum do not inhabit a lesser world, but one organized according to patterns and experiences that others must learn to recognize and understand.

Rare Diseases: The testimonies of Natanael Merzel and Jože Faganel, President of the Rare Diseases Association (Društvo za redke bolezni), highlighted one of the less visible yet particularly challenging areas of medicine. Living with a rare disease can expose weaknesses in healthcare, social, and organizational systems that are intended to provide support but may be too slow, fragmented, or insufficiently adapted to the specific needs of people affected by rare conditions.

Their experiences underscored the importance of coordinated care, access to expertise, and sustained support for patients and families who may face not only the burden of disease itself but also the difficulties associated with its rarity.

Dementia: The discussion of dementia brought together the perspectives of Štefanija L. Zlobec, President of Spominčica – Alzheimer Slovenia, and neuropsychiatrist Vida Drame Orožim, who also had personal experience of accompanying a person living with dementia.

Their testimonies addressed the profound consequences of progressive memory loss, which extend far beyond the medical manifestations of disease and reach into questions of personal identity and human relationships. Dementia confronts patients, families, caregivers, and healthcare professionals with a fundamental question: Who are we when memory begins to fail? Their accounts also emphasized the importance of preserving dignity, relationships, and personhood throughout the course of the disease.

Atopic Dermatitis: Martina Piskar from the Atopika Institute (Zavod Atopika) described the experience of living with atopic dermatitis, including persistent itching, painful skin, and the feeling of alienation from one’s own body. Her testimony demonstrated that the consequences of atopic dermatitis extend well beyond visible skin lesions.

The skin is intimately connected with identity, social interaction, and the way in which individuals experience themselves and are perceived by others. Visible skin disease can therefore become a source not only of physical suffering but also of stigma and social isolation. Her account highlighted the need to recognize the psychological and social burden of atopic dermatitis alongside its physical manifestations.

Conclusion: The meeting demonstrated the educational value of bringing medical students into direct dialogue with patients, caregivers, physicians, and patient organizations. Personal testimonies complement biomedical knowledge by revealing dimensions of illness that cannot be fully conveyed through textbooks, lectures, laboratory findings, or diagnostic categories. Across very different conditions, a common message emerged: medicine deals not only with diseases but with people whose illness is embedded in their identity, relationships, everyday lives, and social environment. Listening to their experiences can help future physicians develop a more comprehensive understanding of illness and reinforce the importance of empathy, dignity, solidarity, and patient-centred care in medical practice.