The impact of bodily change on social behaviour in patients with thyroid-associated ophthalmopathy

Thyroid-associated ophthalmopathy (TAO) is characterized by the altered appearance of face and eyes and changed visual function. TAO has been described as alarming and crippling. It is well documented that TAO influences the patient's quality of life negatively. However, little is known about how the bodily change complicates the patient's social behaviour in everyday situations. The aim of this study was to explore how social behaviour is influenced by the bodily change and what it means to patients with TAO. An ethnographic study was conducted using in-depth interviews and participant observation. A total of 13 patients, nine women and four men, diagnosed with moderate to severe TAO were included. Data analysis was performed concurrently using grounded theory technique. The local ethics committee approved the study, and all participants gave written informed consent. The study reveals that the experience of bodily change had considerable consequences for patients' involvement with people and maintenance of social relations. Uncontrollable eyes were the dominating experience. It contained four sub-themes; the experience of changed facial communication, the experience of being somebody else, the experience of being clumsy among others and the experience of being cut off from the outside world. The bodily change affected people's attitude and behaviour towards them and their own ways of being with people. They struggled to change social behaviour and avoid withdrawal. In their struggle, they used seven different coping strategies. The study contributes to clarification of essential aspects of living with TAO. The condition of uncontrollable eyes may have serious consequences for patients' social behaviour and relationships with others. Early identification of the impact of bodily change and planned support may help prevent serious quality of life change.