Jewish Health

Emotions and reflection

Finding out about and living with a serious and life-long health condition often evokes strong emotions from those who are affected and from those around them (see Feelings about diagnosis). As time goes on, initial feelings of shock, fear and despair may slowly give way to acceptance and learning new ways of managing day to day. Most of the people we spoke to had lived with their condition for many years. Here they reflect on the often difficult and conflicting emotions they experienced during the course of their lives with the condition.
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People’s experiences differed widely in terms of how much their condition had affected their day to day life and whether they felt having it had become part of their identity (see Effect on life).
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Those who had discovered they carried a BRCA mutation generally felt that it was better to know than not to know. A couple of them said they actually felt ‘lucky’ because finding out that they had the ‘faulty’ gene allowed them to take control and ‘do something about it’. All the women we spoke to decided to have preventive surgery but some found this decision much harder than others. Also, they were conscious that while they had substantially reduced their own cancer risk, the gene was likely to ‘live on’ in some of their children and grandchildren.
For a few people, even temporarily forgetting about their own or their child’s condition was difficult. This was either because managing their condition happened to interfere with a lot of day-to-day activities, as was the case for several of the people with Crohn’s disease, or in the case of one man with Torsion dystonia, because other people’s reactions or looking at pictures of himself would remind him of his condition.
Having a good relationship with health professionals and feeling that they were well looked after provided reassurance for many people.
Many people described a difficult balance of the condition on the one hand always being ‘at the back of their mind’ whilst on the other hand, ‘trying not to think about it’. Several people said it was important for them not to feel defined by their condition and a few said it was possible to forget about it for periods at a time. However, sooner or later certain events would bring it back into focus. For example, the anniversary of receiving a diagnosis or a forthcoming check-up appointment could trigger renewed feelings of sadness or anxiety.
Some of those with Crohn’s disease had experienced periods without flare-ups when their life was largely unaffected. For others, trips abroad and dinner invitations were occasions they had come to dread. One mother of a teenage son with Crohn’s said she had decided in favour of surgery to give him a period of relief from the disease and allow him to grow normally before Crohn’s would take hold again. A couple of those with Crohn’s disease talked of their hope that in the future, improved knowledge about the condition would result in improved treatment.
 
A couple of women who had experienced breast cancer described how seeing other women going through treatment brought back difficult memories. At the same time though, it felt good to be able to give support and reassurance to others.
A few people said that by facing up to a terrifying and potentially life-threatening condition they had discovered inner strength and resilience. Religious faith also played a part in helping people to come to terms with and accepting their condition.
Some people reflected on their experiences with humour.
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Last reviewed September 2015.

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