The aim of this seminar was to look further into the theoretical conceptualisations of ‘the illness experience’, specifically those of chronic illness as identified in the paper by Kathy Chamaz. We looked at a number of videos on the HealthTalkOnline website, where people shared from personal experience the impact their diagnosis of Rheumatoid Arthritis had on them. We attempted to link the issues raised in the paper to those discussed in the videos and came up with a number of interesting findings.
The main theme presented by Chamaz was the ‘loss of self’ experienced by people with chronic illness and this occurred for a number of reasons. We all picked up on different aspects of the chronic illness experience in relation to this, which made for good discussion.
Some of the key points raised were the time it took people to get to grips with their diagnosis – we noted there seemed to be a process people went through, from initial denial, through to a number of overwhelming emotions, and finally to a stage of acceptance – if at all reached. We noted the fact that some people were actually relieved at having a medical diagnosis as opposed to just a set of symptoms perceived by others to be purely psychological. This tied in with the issue of being ‘discredited’, which contributed to a ‘loss of self’. We found that the isolation, restricted life and burden the chronically ill pose on those around them, coupled with the perception those close to them have, as diminished shadows of their ‘former self’, all contributed to a negative experience and feeling of loss of self/identity. It was interesting to note the fact that there was very little reference to physical pain in all the discussion, which happened to be centred more on the psychosocial.
Another area we covered was fragmented care that occurs when chronic illness is treated within an acute framework, resulting in an increased burden on carers. Given that the paper was written over 30 years ago however, we began to question whether this was in fact still the case in present time. Regardless, we pointed out that carers still did seem to be missed in looking at the experience of chronic illness when in fact their lives are often linked, leading to their own set of experiences as a result, and they too may require additional support.
Despite the overwhelming negatives, we did note the fact that there are some people, albeit a very few, that manage to overcome their problems and use it as a tool of self-discovery with a more positive outlook on life.
The discussion paved the way for us to question the impact culture had on the experience of chronic illness, as the paper and the videos seemed to be very ‘monocultural’. We suggested that chronic illness experience is shaped by our differences, whether they be in terms of culture, ethnicity, age, or even gender. We suggested that having a strong support network will play a key role in the individuals perception of their ‘self’ and help shape their overall experience of illness for the better.
