Kidney health

Thoughts and feelings at diagnosis

We asked the people we spoke to about their thoughts and feelings when they had first found out that they had a mild kidney impairment. For some, diagnosis had happened quite recently and they had clear recollections of what went through their minds. Others had lived with the knowledge of their kidney function being slightly impaired for many years, and some of them struggled to remember how they had felt about it at first. People’s initial reactions varied greatly; some felt little concern, relief or indifference and others said they were shocked, worried or fearful. Other health concerns, outlook on life and people’s age, personal and family circumstances influenced how they responded to the diagnosis. How much, and the type of information and explanation people were given at diagnosis also influenced some people’s reactions (see also ‘The words doctors used to explain kidney impairment’).
Some people we talked to had hardly thought about their kidney impairment in terms of a diagnosis before we interviewed them. Jill said she wasn’t “very inquisitive” when told about her kidney impairment. Knowing that she would be monitored on a regular basis and that there was no immediate need to be referred to hospital was sufficiently reassuring to her. Margaret also said she “wasn’t fussed about it”. Eric accepted that it was just part of the ageing process and he trusted his GP to monitor his kidney function and tell him if treatment was required.

Even though a mild kidney impairment is not usually associated with symptoms, receiving a diagnosis could make some people wonder whether symptoms of ill health that they had experienced in the run up to diagnosis might be caused by their kidney function.
However, the absence of symptoms may make it hard to view kidney impairment as a health concern. Jim, who also has Type 2 diabetes, said he found it difficult to understand that he had been diagnosed with a kidney impairment when he did not feel any different in himself. He reasoned that since there had been no need to provide treatment, the condition could not be too serious. He’d rather not think about it and concentrate on his diabetes.
Some people had experienced strong and sometimes quite mixed emotions during the diagnostic process.
Knowledge of others who had been treated for more advanced kidney disease (that is, stages 4 and 5) influenced how people reacted to being told about their own mild kidney impairment, but in different ways. Some were terrified of the prospect of their own kidneys declining to a stage where they might need dialysis or transplant in future. Elizabeth said she “could just see dialysis on the way” when her GP told her that her kidneys weren’t working as well as they should, although she admits jumping to conclusions. However, others felt reassured that there would be treatment available and a good quality of life was possible. For example, John’s mother had died of kidney failure, but he feels reassured that in the forty years since her death, medicine and technology has made significant progress.
When receiving a diagnosis, it can be very important for people to understand the reasons why they have been affected by a condition and whether their lifestyle or genetic heritage has put them at a greater risk of poor kidney health. A willingness by health professionals to discuss these issues can help people in making sense of their diagnosis. However, it can be difficult sometimes to find the courage to ask further questions if appointment times are short or people don’t feel confident enough. Some people who had felt very worried when they were first told about their kidney impairment had tried to find out more information online, but that could sometimes raise further anxieties rather than put worries to rest (see also ‘Sources of information’). Others had told a sympathetic GP or nurse about their concerns, but not everyone felt able to do so.
People who believed that there had been avoidable delays in informing them about their decline in kidney health could feel quite angry about this.
Some of the people we spoke to hadn’t been aware of their kidney impairment before they were invited to take part in research, and a few others had found out ‘by accident’ in an unplanned manner when they saw a different health professional who assumed they knew, or when they received copies of referral letters or test results. Joan, who had made a point of always asking about her kidney health at her diabetes check-ups, initially thought it was a mix-up when a nurse approached her about taking part in research about people’s experience of early stage chronic kidney disease. See also ‘How did people find out about their kidney impairment?’.

People’s thoughts and feelings at diagnosis were often influenced by the language health professionals had used to break the news. Use of words like ‘kidney damage’ or ‘kidney failure’ could be quite frightening, whereas a description of the decrease in kidney function as a percentage or stage seemed to be less alarming. However, the exact meaning of the figures people had been given was often unclear and they struggled to make sense of formulations such as ‘on the borderline’ or ‘a bit low’ (see also ‘The words doctors used to explain kidney impairment’). Martin had felt worried by the term ‘chronic’; he thought it made it sound more serious than it actually was.

In the context of other serious health conditions, diagnosis of kidney impairment may not seem like a major event. For Tina, it was “yet another thing to add to the list” and she could not really take it in. Kath described kidney health as taking a backseat against her main health problem of coping with pain from rheumatoid arthritis.

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