We asked people about the effects their health condition had on their day to day lives. Some of the conditions people experienced were more life-limiting than others in terms of symptoms and treatment regimes. Nevertheless, even those who ‘only’ carried a faulty gene and had not experienced acute health problems from this said that knowledge of their condition or genetic make-up had made them think differently about certain aspects of their lives.
For a few people, the main effect of finding out about their condition was a heightened sense of awareness and watchfulness. Those with Factor 11 Deficiency would make sure to tell doctors and dentists about their higher risk of excessive bleeding and carry a card for emergencies, but their day to day lives remained mostly unaffected.
For those carrying a BRCA mutation, the knowledge that they had a greatly increased risk of developing breast and ovarian cancer persuaded most women to have preventive surgery (see BRCA mutation and preventive surgery
). However, worries about the cancer returning or passing on the gene to future generations remained.
Several people described how finding out that they had a potentially life-threatening illness had changed their attitude and made them reassess their priorities in life. For a few people, this meant ‘living life at double speed’: being more active and doing more things than they otherwise would have done. A few people who had cancer or had recovered from cancer talked about ‘bucket lists’ - things they wanted to do – and had done - while they still could.
One man who developed Crohn’s disease in his early twenties said that having his health taken away had fed his recklessness as it made him realise that a large part of his well-being was out of his control. Some people also said it had made them re-evaluate their relationships – bringing them closer to a partner, or finding out who their friends really were (see Relationships
Several people said that their condition had made their lives more unpredictable. They would experience good days and bad days, but frequently it would not be possible to know in advance. They talked about the difficulty of planning ahead and the need to take each day as it comes. A few people also mentioned difficulty in getting life insurance and travel insurance as further practical complications.
Several people with Crohn’s disease described a pre-occupation with knowing where the toilets were located wherever they went - even during periods when they felt well and were unlikely to need a ‘quick escape’. Harvey said he would still travel despite his stoma, but would choose countries which were known to have good sanitary facilities. They resented the fact that their condition had affected them psychologically as well as practically in this way.
Many people said it was important for them to feel that their lives were not dominated by their health problems. Many gave up things they had enjoyed previously, but they tried to focus instead on the things they were still able to do, and many felt proud about what they had been able to achieve despite their condition. One woman with Crohn’s described how she maintained a love of food despite her condition and would adapt recipes to suit her dietary requirements.
Overall, most people seemed to agree that mental attitude could make a big difference to their experience. Unfortunately, not everyone felt that they had received adequate psychological support from health professionals.
Many people said that having supportive partners, friends and family who would share the impact of the condition on their everyday lives made things easier for them (see Relationships and Support and support groups).