Compassion in Dying‘s new booklet What now? Questions to ask after a terminal diagnosis is based on the experiences of more than 600 people living with terminal illness, and their carers, reflecting how people access information, who they speak to about their options, and crucially – what people wish they’d known at the time.
Getting a diagnosis
Not surprisingly people have different emotional reactions when first diagnosed. While some described feelings of anger and fear, finding it hard to cope, others felt reassured that they finally knew the cause of their change in health – “I was relieved to finally know my diagnosis after almost two years of rapid physical deterioration and difficulties in finding what was wrong”.
As well as explaining the impact on themselves, people spoke about the effect their diagnosis and illness had on their family and friends. Some felt well supported, and comfortable having discussions with their loved ones – “Having a terminal illness, oddly, has brought us closer as a family. We talk much more openly and I feel more able to talk about how I feel”. But others explained that they felt their illness was misunderstood, leaving them isolated –