With little public awareness of atrial fibrillation (AF), few people had any knowledge of the condition when diagnosed. As Elisabeth X said, “I didn’t know anything about anything. I knew about babies.”
Others had heard about AF from friends or had a nursing background. Mary had heard about it from a neighbour and a friend with AF in her church choir but had “no idea whatsoever” about the condition. After her diagnosis, she felt she had “joined the AF club”.
Some people felt fear when first diagnosed and a sense of anxiety about the future. Roger experienced uncertainty, as he was aware that symptoms could range in severity. Bob said that his first question on receiving the diagnosis was “Am I going to die?” He said he was reassured that he could have treatment, and then just “wanted to get rid of it”.
Without reassurance or information, Elisabeth X was “absolutely terrified” when diagnosed and feared dying and “leaving my children behind.”
Eileen found the recurrent and unpredictable nature of AF frightening: “You’re frightened of doing anything. You’re just waiting for the next time it happens” but then realised “you can’t let the bugger beat you, so you carry on and hope for the best.”
Brendan found a formal diagnosis sobering and had questions about how this could impact in the longer term.
Noel had no idea what AF was when he was diagnosed. He was frightened to leave the house.
Having led healthy lives, some people said they were “fed up”, “annoyed” or “angry” with the diagnosis. Jenny, whose husband James had a stroke as a result of undiagnosed AF, felt regret. Having heard his heart beating irregularly a few weeks before and dismissing it as unimportant, she reflected that they wished they had acted. She said that they now had to live with thoughts of “if only”.
Dot was annoyed that her body had let her down.
Although the diagnosis was unwelcome for some, others were not unduly worried. Richard felt calm, knowing that his condition could be managed. Some people had got so used to having palpitations before their diagnosis that they saw them as part of everyday life.
Pauline and Vera were “relieved” to have an explanation for their symptoms. Ginny, a passionate mountaineer, accepted the diagnosis but was disappointed that she would not be able to get insurance to travel abroad for a period after her operation. (For more see Impact of atrial fibrillation on relationships and leisure time).
On hearing that Tony Blair and Elton John had had AF, Raymond felt reassured.
People we interviewed had different attitudes to telling others about their diagnosis. Some chose to “keep it a secret”, not wanting to distress family and friends. Others were more open. Dave used his diagnosis to explain to friends why he could no longer keep up when walking, while Chris X’s father-in-law, a GP, set about researching the condition for him.
Stopping people’s concerns and explaining the condition was important but not always easy. Nuala described how her diagnosis was “a topic of conversation” wherever she went. While she accepted that people were genuinely caring, she found it irritating having to explain AF to friends who wrongly assumed she had had a heart attack.