During this period it is quite normal for people to experience a range of emotions, such as being worried, feeling fed up and low, or feeling snappy and irritable.
Trying to pretend everything is okay, or ignoring how you feel can actually cause more problems in the long run. However, as you begin to make sense of all of the information and start to work out what living with kidney failure will be like for you, these negative feelings will start to improve. A lot of the time, people surprise themselves at just how well they have coped, and they may even start to look at life differently.
I’ve learnt to stay independent, by asking for the help I needAnonymous
Living with kidney failure is not always easy, but along the way there are things that people have found helpful. These include:
Support: It is difficult to manage on your own, and support from family, friends, and hospital staff is really important. Some people struggle to feel looked after by others, and do not want to be a burden, so do not like to ask for help. However friends and family will not know what it is like to feel like you, and they will need you to tell them how they can offer the best support.
Getting the right information: Often when we are in a negative mood, our thinking is negative too, and we tend to expect the worst. Finding out full information from this booklet and other sources can help to keep your thinking balanced.
Having a life outside of treatment: Some people find that everything ends up revolving around their medical treatment and life is put on hold. It is important to find things to do that have nothing to do with your kidney failure, such as a job, hobbies, or your role within the family. This can help you to keep going and to find purpose and satisfaction. For example, if you’re on dialysis, you should dialyse to live, not live to dialyse.
Don’t take it out on yourself: Living with kidney failure can change your life, and this can change the way you look at yourself. Some people end up blaming themselves and this can actually lead to more distress.
Stress management: Stress can happen when our demands are greater than our resources to cope with them, so be aware of not taking on too much, or putting too much pressure on yourself. Also, increase your resources by taking time out to do nice things and relax.
Take control: In chronic health problems, people often feel out of control, and over time people give up and avoid things, this can affect their mood. It is important to keep a sense of being in control of your health, for example: find out information, keep records of your results, make sure you are fully involved in all the decisions about your treatment, keep on top of medications, and learn how to set up the dialysis machine yourself.
Give your body the best chance: Low mood can affect our energy levels, but also kidney failure can make you very tired, and there is a tendency to limit activity. However some people may rest too much, and this means that your muscles will weaken. Keeping up gentle exercise can actually help with the tiredness, and can promote well-being. Having a healthy diet helps with well-being too.
What sort of problems do people with kidney disease experience?
- Shock after diagnosis
- Coming to terms with having kidney disease
- Deciding which treatment options or medical procedures are best for them
- Worries or problems about a particular type of treatment
- Emotional or relationship difficulties brought about by illness or treatments
- The stress of adjusting to new treatments, for example a transplant
- Sexual difficulties
- Keeping to a treatment regime
- Kidney donation and its implications
- Sometimes feeling overwhelmed, like it’s all too much
- Feeling anxious or depressed
I'm finding it hard to follow my treatment?
It is common for people to find it hard to follow complex medical advice and treatment as this involves major changes to their daily life. Your treatment is extremely important as it can improve the outcome of your condition. If you are experiencing difficulties with following medical treatment we may be able to help.
How common is my problem?
Probably most people with kidney disease find it difficult coping with their condition, or the treatments for it, at some point in their lives. It is a life changing illness and requires a great deal of practical and emotional adjustment. There is no reason to feel ashamed or embarrassed if you are finding things hard going.
Long-term conditions like chronic kidney disease (CKD) can affect different areas of your life as well as your health. Emotional resilience is about coping with your problems and finding a way to continue to live well, even when under considerable stress.
This leaflet gives an introduction to emotional resilience and provides some tips on how it can help you to cope with the stresses you may experience in your life.
Emotional resilience will not stop you from feeling stressed or experiencing difficult emotions. However it can help you to cope with difficult experiences without letting them become over-whelming.