Emotional Well-being

Living with Chronic Kidney Disease (CKD) – information and tips for patients, family members, friends and carers.

Living with a new diagnosis of chronic kidney disease (CKD) can be overwhelming at first. Your energy will be directed towards planning what your future might look like, thinking about your treatment options, and managing your physical wellbeing to optimise your health. But looking after your emotional wellbeing is just as important as looking after your physical health.

A diagnosis of CKD does not just affect the person, but their entire family/whānau, their friends, and those who care for them. Some people feel that their life has been turned upside down. As a result of getting a diagnosis of CKD, the person may have to manage changes to their working life, family life, finances and activities, particularly if they feel tired, or are having to juggle dialysis commitments.

These changes can cause a great deal of stress, and a range of emotional reactions that is similar to grieving. Some people may feel shock, anger or sadness. Some people may have trouble adjusting to an altered sense of identity when being diagnosed with a chronic illness. Others report a loss of control or independence in their life. Some people find it hard to talk about how they are feeling. These feelings can be overwhelming, and relationships, work and home life can suffer without the right support.

Fortunately, most people learn to live with CKD, but they may need to adjust some aspects of their lives in order to manage their wellbeing, their energy, and to reach a place of acceptance of this new diagnosis.

CKD and emotional wellbeing 

Acceptance of living with CKD may not always come easily or without support from others. While you may not be able to change a diagnosis, you can change the way you deal with it.

Here are some ideas that may help you manage these changes and feelings:

• Maintain open and honest communication with loved ones. 
• Accept help when you need it. People offer support because they want to. It makes them feel useful. Let the person know what it is you need, so they know how they might be able to help. It can be frustrating getting offers of help that are not wanted or needed, and it is important to be able to maintain your independence.
• You are encouraged to talk with your GP. As well as being able to refer for counselling support and prescribe medications, they can help with symptom management.
• Knowledge is power. Learn as much as you can about your condition and the treatment options.
• Don’t be afraid to ask questions. Your GP or your renal team will be happy to answer your questions.
• Try to stay active. Physical activity benefits your emotional wellbeing, as well as keeping you fit and well. Talk with your GP about beginning an exercise programme. Many GP practices employ Health Improvement Practitioners (HIPs) and green prescriptions are available.
• Take good care of yourself. Indulge yourself in healthy activities that bring you joy, whether it is listening to music, reading, or enjoying movies.
• Talk with the renal dietician about what modifications, if any, you might need to make to your diet.
• It’s OK to tell people you aren’t up to socialising if you’re not feeling up to it. You need to manage your energy levels and take care of you, but don’t isolate yourself.
• Talk with other people with CKD, join a community support group, or social media group. Other people are on the same journey as you and understand what it is like to have CKD. Talking with others who are living with CKD can help a person to feel less isolated, and it may not seem so scary.
• People’s cultural and spiritual beliefs are very important and can affect the way a person feels about their kidney disease. If you have already been referred to hospital renal services, you can request cultural and spiritual support as needed.

If you have been referred to hospital renal services, you can ask for support. Most renal services have renal social workers, and some have psychology support available. A social worker can assist with such issues as travel to dialysis, housing, care supports, employment or financial supports. If you are struggling with your mental health, let your renal specialist know. You may be able to talk with a renal psychologist.

To read the full 'CKD and Emotional wellbeing checklist' click here

Managing Depression in CKD

If you, your loved ones, or your GP or specialist feel that you are depressed, your doctor or nurse practitioner may be able to help. They may refer you for funded counselling or talk therapy with a counsellor or psychologist.

They may also recommend the use of an anti-depressant medication to see if it helps. If you are prescribed an anti-depressant medication, it may take up to six weeks before you, or those around you, start noticing a difference in your mood. 

Because accessing GP appointments and counselling support is not always immediate, and the effects of the anti-depressant medications can take weeks to be effective, it is better to talk with your doctor earlier, rather than later.

If your symptoms of depression are getting worse, or if you have thoughts about wanting to end your life, please talk with your doctor as soon as possible.

If you need to talk with someone right away, helpline services are available right now that offer support to you, and those you care about.

To access a list of phone, email and website supports in NZ, please click Here

If you (or someone you know) are having a mental health crisis, are thinking seriously about harming yourself or have a plan in place to end your life, please call your local mental health crisis assessment team at your nearest hospital https://info.health.nz/services-support/mental-health-services/crisis-assessment-teams/  You can also go straight to your local emergency department who will call the mental health crisis assessment team.

If a person is in immediate danger to themselves or others, call 111.