- Loss of former self image; especially in terms of social relations and existence
- Care framework used not necessarily appropriate for chronic illness and therefore full consideration as to the extent of their suffering can be limited. For example the gentleman who at the time of his wife’s diagnosis had absolutely no idea of the long term outcomes.
- Restrictions on life-“direct restrictions e.g. intrusive treatment becomes a constant reminder of loss of freedom.” In comparison to this one lady actually enjoyed her anti- TNF infusion appointments as they were every 8 weeks and it was an opportunity for her to socialise with other people in a similar position to her.
- The unpredictable course of illness and potentially embarrassing aspects of the illness – for example a lady who has changed the way she dresses due to the swellings and deformities of her hands and feet.
- Social isolation inattentiveness of former friends and family, being discredited, ignored and devalued by others. Social integration can be difficult when fatigue or discomfort is high. The gentleman whose wife has RA discusses how the support of all their friends and families has been so beneficial to her coping with her condition. Another example is the gentleman who found it extremely helpful to talk to people at work about his condition.
A point I found that cropped up a few times in the interviews was the burdens of coping with the side effects of the (sometimes many) drugs. These tended to be similar to the burdens of the chronic illness itself but I felt it was an important point to take on board.
