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How does kidney disease affect your mind and spirit?
Many people with kidney disease experience different emotions at different stages of their journey with kidney disease. Initially there may be disbelief that this is happening to you.
When the reality hits you may experience a period of mourning for the loss of your kidney function. Frustration, despair, fear, a sense of lack of control and depression are commonly experienced by those with chronic kidney disease, especially if you are going to need dialysis or a transplant. There are a number of things you can do to help yourself cope emotionally and spiritually.
Some losses may seem trivial - like limiting social engagements or shifting housework to a partner - yet these can be important and may signal changes in relationships such as greater dependence. Many people talk about grieving for their previous health, abilities and life before chronic kidney disease (CKD). Mental health problems may develop because:
- adapting to living with chronic kidney disease is stressful - for the individual and family members
- we may feel our body and general situation are out of control, and there is nothing that we can do
- we feel lonely and isolated from family and friends
- it can be difficult to talk about illness with those close to us - we don't want to worry or upset them
For some, the emotional impact can feel overwhelming and can leave us very anxious and depressed. It can stop us from doing the things we need to do in our daily lives or prevent us enjoying fun things we usually do.
How do I cope with these emotions?
Some difficult emotions only last for a short time. It is okay to be angry, sad or fearful for a short time, but care must be taken that it does not negatively affect your long-term life or that of your loved ones. It is okay to cry, shout or withdraw occasionally but this should not continue.
Talking to a loved one or a trusted health professional may provide enough support to work through your emotions. Social workers and psychologists are trained to listen to your worries and help you find solutions. Your general practitioner can refer you to a trained health professional. Talking with others who have had similar experiences may also help you, especially if they are now back in control of their lives and doing well.
Depression and anxiety are very common with CKD
They can appear in people affected and in those who care about them, through all stages of CKD - from diagnosis to dialysis, following transplantation and even in deciding not to start or to withdraw from dialysis. These feelings are normal and it is helpful to talk about them with people who care about us. While they are unsettling, each of us has the ability to learn new coping skills and develop relationships with individuals who can provide support. It is known that:
- people living with chronic illness who have effective treatment for associated depression, can improve control of their illness
- symptoms of depression are often unrecognised or confused with symptoms of other illnesses
- mental illness is treatable and the vast majority recover well
- three million Australians will experience a major depressive illness during their lifetime
Do I have depression?
On average 1 in 6 people suffer depression at some stage in their life-time. It is an illness that has treatments. There are simple questions to ask yourself that help you to work out if you may have depression?
- Do I struggle to get out of bed and do daily activities regularly?
- Do I feel as if I am surrounded by a black cloud?
- Do I cry regularly?
- Do I get angry easily for no reason?
- Have I stopped paying attention to how I look?
- Am I eating for comfort or refusing to eat at all?
- Do I consider harming myself?
Visit your general practitioner if you are answering yes to one or more of these questions. Ask a loved one of friend to help if you feel you take the first step if you cannot face this alone.
Are depression and anxiety disorders treatable?
Learning to understand them and how they are treated, embrace things you can do to manage symptoms yourself. This is a powerful way to start on the road to recovery. Recovery means that you will be among the many people living with CKD who have been through this experience and are leading productive and satisfying lives.
What are the treatments for anxiety and depression?
Both counseling and medications are used to treat depression. Your health professionals will assess your special needs. Your general practitioner can help or you may prefer to talk to someone on a helpline. What is important is to take the first step and realise that you need specialist help.
For help, you can immediately contact: Beyond Blue Infoline (National) 1300 224 636
Why are mental health problems more common among people living with CKD?
Depression and anxiety are medical conditions. As with many other conditions, some people are born with a genetic disposition to developing them. Certain things - stress or other life events - can then trigger the onset of symptoms. Adjusting to and coping with changes that accompany CKD may bring ongoing stress that can build up over time.
Certain events are also particularly stressful and you may be more likely to develop depression or anxiety at these times - at diagnosis, beginning treatment, after transplant or when taking certain medications. People you get to know during treatment may become unwell or die. Coping with other medical problems such as skin cancers or high blood pressure, dealing with relationship break-ups or job loss can also be stressful triggers. Stress is probably the most common reason for poor mental health in people with kidney disease.
Can religious or spiritual beliefs help?
Although religious or spiritual beliefs are not a cure for kidney disease for many they can provide great emotional support. For some of you religious practice will already be an important part of every-day life. The church community and leaders may provide a strong support network, both spiritually and practically. For others religion may be something that you occasionally turn to for emotional support at difficult times of life. All of you may benefit from sharing your current concerns with a minister of your spiritual community.
There are churches for all denominations in most areas. The leaders or ministers will always be willing to talk with you and offer support. Every hospital has visiting ministers, who visit regardless of religion. If you feel religion could help you take the first step and contact your local minister.
If you are an Indigenous Australian it is likely that your spiritual belief will be very important and deeply connected with Australian lands. It is important to let health professionals know when you need to go away because of your spiritual needs.
'Kidney Stories' uses graphics to tell these stories and can tell you more about a journey with kidney failure.
Can alternative/complimentary therapies help?
There are many alternative therapies available that may compliment your traditional healthcare. Some research has been done in this area but for many there is little proof of effect. This does not mean that you may not benefit from alternative healthcare. However it is important to check the qualifications and experience of those who provide this type of healthcare. It is also important to let them know you have kidney failure, especially if they are prescribing medications for you. Likewise let your general practitioner or kidney specialist know if you are taking alternative medications. Complimentary therapists include:
- Chiropractors (back-care)
- Naturopaths (aromatherapy and supplements)
- Massage therapists
What are lifestyle changes that support a healthy mind and body?
Physical activity, positive interactions with others, supporting others, hobbies and being involved in a community all support a healthy mind. A healthy diet is also important.
For more information visit www.actbelongcommit.org.au - Western Australian site on mind and body for wellness.
The SANE Guide to Good Mental Health: For people affected by kidney disease
Kidney Health Australia and SANE Australia addressed the issue of mental health and kidney disease. It is estimated that 50% of Australians with CKD are affected by depression. See also SANE in partnership with Pfizer Health Reports - Depression and Chronic Illness
SANE’s ‘Mind and Body’ Initiative aims to draw attention to the physical health needs of people with a mental illness and chronic physical health problems, encouraging treatment of the whole person. This guide looks at mental health problems, treatment options and includes case studies of people with CKD and how it impacts on their lives. Many people have times where they struggle to cope and may become anxious or depressed.
Use our Resource Order Form to order this book from Kidney Health Australia.
Cost - $10 each
Our Kidney Health Information Service (KHIS line)
Free call service for people with, or affected by, kidney and urinary disease or email a query to KHIS@kidney.org.au
For hearing impaired - TTY/Voice 133 677 | Speak & Listen (SSR) 1300 555
MIND, BODY AND CKD - Useful resources
Helpline Numbers - someone to talk to who can lift you out of despair and inspire you to carry on
Palliative or Conservative Care
Resources and publications
Support Groups, Message Boards and social networking - our Kidney Community Online
Updated 25 March 2014 - Disclaimer: This information is intended as a general introduction to this topic and is not meant to substitute for your doctor's or health professional's advice. All care is taken to ensure the information is relevant and applicable to each Australian state. It should be noted Kidney Health Australia recognises each person's experience is individual and variations do occur in treatment and management due to personal circumstances. Should you require further info always consult your doctor or health professional.