Secrecy and silence in Huntington’s disease

1. Secrecy and silence in Huntington’s disease Eleanor Wilson PhD Student Supervisors: Dr. Kristian Pollock & Dr. Aimee Aubeeluck Funding: The Sue Ryder Care Centre for the study of supportive, palliative and end of life care

2. Huntington’s disease • Neuro-degenerative condition • Hereditary (dominant gene) • Motor, behavioural and cognitive symptoms • Mean age of onset age 40 years • Life expectancy approximately 20 years • Estimates of UK Prevalence 6-10,000

3. The study • Aim • To explore the care needs of people affected by Huntington’s disease • Longitudinal case studies (n=15) • Interviews n=46 • Observations n=36 • Eco-maps • Genograms

4. Secrecy and silence • Secrecy as a deliberate act not to tell • Silence as a tacit understanding not to discuss • Secrets and silence as a way of coping and or denial/avoidance strategy. • Several participants discussed if, how and when they decided to tell people • Stories of how secrecy and silence within families affected their experience of finding out about, understanding and living with HD

5. Secrecy and silence • Coping • Protecting • Shielding • Blocking • Control • Choice • Exposed • Challenging the secret • Breaking the silence

6. Coping: Protecting This isn’t about blaming, it’s just about people been able to handle what they can handle really, or can’t handle, because I kept it a secret for years so who am I to be judging somebody else.

7. Coping: Shielding I had to have an emergency doctor out to her … again most people who would come round like that, I wrote him a little note because I didn’t want my mother to know what she’d got, because of it being hereditary. … She knew she’d got something but we called it something else. I knew she would have been, well she was brave with her own illness but if she thought she’d passed it on to me, she’d have been really upset.

8. Coping: Blocking Because we’ve tried talking to (our daughter) about it but. She just ends up getting upset and runs upstairs and that’s the end of it. And we were talking to [the Regional Care Advisor] and [she] said there might be something that she wants to ask but she’s too frightened to ask us.

9. Control: Choice Because once you told work there’s no going back, you can’t alter things again, you can’t turn the clocks back and undo it, it’s got to be the right time to tell everybody. And we live in a very rural area so people in our village were directors of the company where David was employed anyway, so as soon as you let it out, then it’s got to be everybody.

10. Control: Exposed Wife: Saturday night we went out and he went to get off the stool in the pub, in the local pub up the road, and he stumbled and there was this couple sat near us and he sort of looked at him as if to say ‘oh a few too many [drinks]’, … And he says to them ‘I’m not drunk mate, I’ve got Huntington’s disease’, …I think that’s better, to make people more aware.

11. Challenging the secret And so what I did was accidentally leave information there in the cupboard. I didn’t want my brother-in-law and his [wife not to know], they’d got one child, I wanted them to have information, it was there for them to take. I didn’t tell them but left it there because I felt, my conscience was like I had to, I really had to. …my brother-in-law didn’t have any more (children), he just had the one (child), and that I know was because I’d left the information there. Because later they thanked me for that.

12. Breaking the silence But it hasn’t been as bad as I expected in some ways because I had the knowledge to [understand] …[my] family didn’t talk about it, keep it under the carpet because nobody’s going to be helpful and nobody’s going to want to know because [having HD is] going to cause too many problems. Whereas, our generation, it was the opposite, we wanted to know.

13. Secrecy and silenceFinal thoughts… • A way of coping, shielding and protecting • Want control over what they choose to tell people and when • Exposed by body • Rights to information • Private and public knowledge • The genetic nature of the disease further complicates decisions to share information • Concepts are linked to ‘closed awareness’ (secrecy) and ‘suspicion’ or ‘pretence’ (silence)