Table 2 The environment theme as articulated in the first four interviews. Each row represents a sub-theme
Interview 1 | Interview 2 | Interview 3 | Interview 4 |
|---|---|---|---|
Accessibility | |||
How much I choose to share about my illness The importance of age Prejudice Avoid telling it-if possible | Judgemental | The possibility of hiding your illness Misjudged considerations by teachers -feel exposed | Being pigeonholed Lack of understanding |
Mistrust Disrespecting that they interfere Exhausting to apply for aids Being reminded about the illness A wish for a solution-orientated approach | Interchanging social workers They believe you to be ill just for fun Inflexible You expose yourself, but there is a lack of understanding | Irrelevant offers A wall of bureaucracy | Mistrust Lack of time/money- cutbacks Unprepared social workers Being nothing but a number Lacking information about rights |
Often only medical solutions are offered. The rest you need to look for yourself. Lack of information regarding prevention Difficult to obtain continuous controls after turning 18 years. Wish for alternatives to medication | Medications as the only suggestion Medication is good -if it helps and bad if it brings adverse reactions | Lack of confidence in your general practitioner Announcing that you have to learn how to live with it. The professional patient (responsibility for your own treatment) | Lack of stable and continuous contact to doctors. Medication is good and bad Side effects as limitations e.g. in relation to alcohol. |
Avoiding the illness by being with others having the illness Feeling understood and accepted among others who are ill | Relief to be with others who are ill Misunderstood sympathy Periodic needs Too much illness when being with others who are ill | Relief not having to explain |