When my partner was first diagnosed with chronic kidney disease he didn’t want anyone to know. This was a particular challenge for me as we both worked within the same organisation. I would normally have talked to my work colleagues but had to be more discreet to preserve his privacy. There were things I didn’t want to say to him as I was trying to work out how it would impact both of us without distressing him further. Initially, his main focus was on his medical treatment and how that was going to affect him.
One of the things that was really helpful to me was attending a get-together held at Manchester Royal Infirmary essentially to provide information for newly diagnosed patients. In addition to the medical staff, there were a number of people there who were either on dialysis or had received a transplant. The opportunity to actually speak to the partner (carer) was very useful. For example, I was wondering whether I might have to give up work, how we would manage financially, how it might affect the children, and whether we’d ever be able to go on holiday again. It seemed that I had the same initial concerns that they had had, and they were generous in sharing their stories which I found reassuring.
I now attend those meetings sharing my story with newly diagnosed patients and their partners and family.
