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Introduction

 

The idea for this social experiment was born in a conversation with Ms. Monika Marinova – chairperson of the NGO „Association of Tarlov patients in Bulgaria. Treatment without borders“. Until that moment I had not the slightest idea about this health problem, even less about the world or the worlds of people with perineural Tarlov cysts.

Mrs. Monica Marinova turned out to be a beautiful, very intelligent and struggling young woman, highly motivated to help people with this disease. After just the first few sentences she managed to intrigue me by touching some of the most sensitive chords in my soul related to the experience of chronic physical pain, which I have lived for more than 50 years. Thanks to her, I also received specialized literature that introduced me to the purely medical side of the problem. But it was this medical side that was „pregnant“ with social and psychological problems that were drowning in the fog of ignorance, neglect and disinterest.

For me, as a sociologist involved in the sociology of medicine, the sociology of disability, and the sociology of illness and health, the importance of uncovering the social worlds of people with tarsal cysts, and illuminating the ways of experiencing and living with this rare disease, quickly became clear. Moreover, this is in line with paradigms in contemporary sociology of illness and health that strongly criticize the „positivist-oriented socio-medical approach“ that continues to treat „chronic illness as a temporary state of the body’s inability to function normally that is conditioned by the imperfection of reason and science. At the same time, „the non-classical approach of the sociology of health is able to capture the fact that pathology is no longer a temporary impediment, but a continuous suffering of the body from chronic diseases 2. Even more, the maxim of the old internists is valid here: „It is always the whole person who is ill“.

This text is dedicated to the people with Tarlov perineural cysts, to their uneasy lives and quiet heroism, to their suffering and daily struggle with chronic physical pain.

This study presents a descriptive analysis of biographical microarratives of people with tarsal cysts. It reveals the worlds of suffering and pain that dominate these people’s lives.

The information gathered and analysed allows for subsequent quantitative and qualitative social research related to one aspect or another of the lives and treatment of people with perineural Tarlov cysts.

Savelyeva, J. В. (2012) Health and disease in the context of sociological theory: the specificity of non-classical approaches. In: Herald of Kazan Technological University, No. 22, p. 205.

Acknowledgements

 

I owe a huge debt of gratitude to the scientific editor of the book – Prof. Ludmila Ivancheva for her selfless and highly professional work on the scientific editing of the text.

I would also like to thank the scientific reviewers – Assoc. Prof. Dr. Julia Vaseva-Dikova and Assoc. Prof. Dr. Silvia Serafimova for their valuable critical comments and important suggestions for improving and supplementing the content of the text.

I also owe a special thanks to Mrs. Monika Marinova – President of the Association of People with Tarlov Cysts in Bulgaria for her enthusiasm, organizational work in conducting the social experiment and in printing the book.

I owe my greatest gratitude to all the people with Tarlov perineural cysts who, despite chronic physical pain and personal problems, found the strength and time to participate in this social experiment.

Prof. DSc Bozhidar Ivkov

„You walk on the edge of a precipice and you don’t know at what moment you will slip and find yourself in total darkness.“

M. Zh. (wife, 37 years old)

„I was devastated I didn’t know what was in store for me. I was asking myself questions that I didn’t have answers to. Would I be able to walk again, would it ever stop hurting, would I be able to send my child to graduation without being in a wheelchair. All questions I didn’t have answers to.“

Zh. S. (wife, 37 years old)

„Living with Tarlov’s cysts is a daily, 24-hour struggle with pain unlike any other… My daily routine, lifestyle and social engagement has changed due to the inability to sit and stand for long periods of time. Prolonged travel is impossible.“

S.K. (wife, 50 years old)