Purpose: In the summer of 1999 I got the disease Guillain Barré syndrom. During my recovery I wrote a text about my experiences at the hospital. In this paper I investigate the patient perspective by using that text. To make the distinction between the patient and the doctor perspective clearer I have also made use of my medical journal.
Methods: Qualitative text analysis. There are some extra challenges writing about oneself. To encounter this I invited three persons to read my text, and to meet me and discuss my findings.
Results and discussion: Reading the text I found four important categories: 1) Meeting with the hospital, 2) confused relationship to own identity, 3) a changed perspective of time, and 4) emotions. In literature about GBS patients specifically as well as patient perspectives in general I find many of the same aspects as in my own text. In the meeting with the hospital I focus on the importance of information and the feeling of being a stranger as a patient. The confused relationship to my identity is expressed as a clear distinction between the unable body and the idle mind. The doctors and I had a different relationship to time, while they used time as an instrument to estimate my objective disease, I lived in the time with a “here-and-now” perspective. The text is coloured with different emotions. I am holding on to my conviction that I will recover. These positive thoughts get stronger when I experience progress. Visiting friends and family is also clearly important for my well being. I also describe fear, anger and disappointment, especially when getting worse and realizing my dependency on the nursing staff. In the medical journal I find some notes about my feelings, there is, however no recollection of the medical staff talking directly with me about it.
Implications: The feeling of being a stranger to oneself and to the hospital explains much of the communication barrier between the patient and doctor. Knowledge about patient perspectives can help the doctors to communicate better with their patients. In specific I find that focusing on the patient as a person and including his questions and thoughts can reduce the feeling of being a stranger. Remembering the patients changed perspective of time can improve the timing of the given information. And at last, directly addressing the patient’s feelings and making the conditions easy for close visitors will help the patient to overcome emotionally.