Question
I have CKD, and I am finding it difficult to discuss my diagnosis and future need for a kidney transplant or dialysis with my family and friends. Is this normal and what is the best way to overcome this?
Answer
Many people find it difficult to talk to their family and friends about their condition and its treatments. This is a very normal way to feel. People often find it difficult to know where to start when trying to discuss their condition with others. Many people feel that not much is known about kidney failure in the wider population and the condition can be complicated to explain. Perhaps the best approach is to choose a family member or friend who you feel most comfortable with first and simply explain that you would like to be able to speak to them about your health but find it difficult to know where to start. Perhaps you could ask if they have any questions about your health that you could answer for them, and this may trigger a helpful conversation. There are leaflets that can be downloaded from the Kidney Care UK website https://www.kidneycareuk.org/order-or-download-booklets that might help you to explain your diagnosis and its treatments.
Some patients also describe finding it difficult to explain the emotional impact their CKD has on them. A good way of trying to explain this to people is simply by saying “Sometimes my physical illness makes me feel……. anxious, low in mood, angry or frustrated (insert which ever emotion it leads you to feel) even positive ones might be appropriate such as grateful, strong or resilient.” This will help others to understand that the impact of CKD is not just upon physical health but on emotional health too. The following leaflet may help you to better understand these feelings but could also be helpful in explaining to others how you may be feeling: https://www.kidneycareuk.org/media/documents/KCUK_Dealing_with_Diagnosis_Leaflet_2020.pdf
The most important thing to remember is that you are not alone in coping with your CKD diagnosis. If speaking to friends and family is difficult then do speak to your renal team at the hospital if you are feeling isolated or alone and they can provide support too. The Kidney Care UK charity can also provide you with support (email: info@kidneycareuk.org or phone: 01420 541424 (Mon-Fri, 9am-5pm). Perhaps consider bringing a friend or family member to one of your renal appointments as a way of sharing information with them or helping them to understand things better. If you feel that you are in need of more in depth psychological or emotional support, then ask your renal team to refer you to the renal psychology service who can provide more formal psychological assessment and therapeutic interventions that may help.
Jessica Dean
