P: When I was told in the clinic I had the gene, I just said, I'm not surprised, I've always known. But you know I didn't really know, I was just thinking if I think I've got it then it can't be worse and it might be better. When we left the clinic I got in the car and my husband said 'let me drive' but I said 'no I want to drive, I'm fine'. But do you know what I did? I reversed out and went bang straight into another parked car ... I started to cry and just couldn't stop.
C: I guess you were very shocked when you left the clinic and your awareness was not as it usually is. Crashing into the car was another crisis which frightened you, as if you hit something else which threw you off course. So perhaps you were crying about your result and the car.
P: I was. I suddenly went into 'stop'; I felt I couldn't do anything. My husband put me to bed and I just cried and slept.
C: It sounds as if you were very shocked.
P: I felt numb when I woke up. I started to remember what had happened and thought, 'No, it isn't true'.
P: Sometimes I would realise and at other times it was like a dream.
C: You were struggling to realise what had happened but it was too much to take in. P: I thought I was prepared but I wasn't, you think you are but until it happens you don't really understand. And even now because I'm no different I still think it might never happen.
C: You are working quite hard to adjust to the news but it's not easy, I guess you are frightened of what it means.
P: Oh, am I frightened especially when I think of my mother and how she was and now I have to tell my kids. I've been so angry as well, 'why me' I've kept saying and 'please not my kids'. But now sometimes I accept that it's going to be like this, 'this is the situation'. It was as if I am trying to wake up out of a dream or something.
C: Almost pretending ...
P: I didn't want to admit it to myself, but I think that was a normal reaction.
C: There's been a realisation to it and an adjustment, some internal adjustment. P: There's been some; I don't say it's been fully to be honest. I'm still angry and depressed and cry but ... more sad inside now.
P: Because at the end of the day it is still a shock to the system ... maybe sort of levelling off, slowly coming to terms with it.
This extract illustrates the struggle between denial and realisation and its resultant anger and depression, which as the individual stated, is normal. Horowitz et al. (2001) comment on the way the feelings change with time. They describe the process of responding to a test result as having a number of phases which include outcry, denial, an intrusive phase (characterised by unbidden thoughts and sudden pangs of emotion), working through and completion.
Symptoms of anxiety emerge when the individual cannot manage to process or contain the emotion and the mental mechanisms of defence fail, are inappropriate for the situation, or are used for too long. Anxiety may present in its many different disguises, some of which include: overt anxiety, panic attacks, intrusive thoughts which preoccupy and dominate thinking, physical symptoms or acting out behaviour where the individual is angry or self harms.
In his analysis of defence and coping mechanisms in 20 individuals at risk of Huntington's disease. Tibben (1993) found that the level of anxiety had a greater discriminating power than the test result itself and was correlated with intrusive feelings and thoughts, strong avoidance behaviour and a decrease in the level of hopelessness. In contrast, carriers with low anxiety showed the least avoidance behaviour and the highest level of hopelessness. He also described a maladaptive pattern where there was acting out, obsessive preoccupation or attacks against the self. Horowitz et al. (2001) noted that if the response is intense or prolonged the outcome is a stress response syndrome, with symptoms which can resemble a post-traumatic stress disorder. The symptoms include intrusive thoughts, pangs of fear, irrational avoidance behaviour and impulsive decision-making. They predicted that 20% of those who receive grim news of genetic risk for a dire disorder will have a stress response. In a study of the effects of pre-symptomatic testing for Huntington's disease over a 3-year period, Tibben et al. (1997) reported there was only slight change from the baseline in intrusive thoughts and avoidance in both carriers and non-carriers. The shock or the relief of the test result was only evident after 1 week with an increase in intrusive thoughts in carriers after 6 months, before returning to the baseline at 3 years.
Figure 2.2 diagrammatically represents the relationship between primary and secondary appraisal, stress and different ways of coping.
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