3 - Foretelling foreknowledge

Summary

Verbal missiles and disclosure talk

People's accounts of dealing with the knowledge of inheriting HD can be described in terms of three key periods each involving the deliberation of multiple decisions. There is first the time of pre-testing deliberation and the decision whether or not to go ahead with the predictive testing protocol for those persons who have reason to believe they may be at risk of developing symptoms later. Second, the long-awaited day of the test result and the ‘truth’ of the revelation this brings. And third, the whole gamut of post-test experiences that mostly evade the follow-up work offered by clinically allied professionals. During the course of my fieldwork most people who had already taken the predictive test wanted to talk about the time they had first found out about their newly revealed pre-symptomatic status. Often, the rest of their accounts would fall into place around these narrated disclosures.

Sam McDonald, a retired schoolteacher in her mid fifties, was one of the first testees who joined my research study. Reading aloud from her private diary, she recalls the day of her test result.

Well, this is what I wrote on the day of the result – you know, the day it happened. I was told today at the hospital that I had inherited the HD gene. I feel devastated and terrified. Dr P. was as always most concerned and supportive. Dr A. from the local clinic came to support me through the interview and see me home safely. I have been seeing Dr A. over the past eighteen months and he has been so understanding at all times.[…]