Chronic kidney disease (CKD) affects how we think and feel

CKD can affect every area of life. Relationships, work, spiritual beliefs and how we socialise with other people may all be affected. This includes our mental health. Many people have times where they struggle to cope, and may become anxious or depressed.

Mental health problems may develop because:

• Adapting to CKD 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. Sometimes it can be difficult to talk about the illness with those close to us. We don’t want to worry or upset them.

How having CKD can affect you emotionally

People with CKD and those who care about and for them can have a range of emotional responses: shock, sadness, grief, fear, anger, frustration, feeling down, tense, or alone, and sometimes many of these.

Some losses may seem relatively 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.

Grieving for previous health

Many people also talk about a grieving for their previous health, abilities and their life before CKD.

Grief can involve:

• Shock and denial – ‘This can’t be happening . . . I just need some rest.’
• Anger – ‘It’s not fair! Why me? I hate you!’
• Fear and anxiety – ‘What will happen?’
• Feeling down – ‘I don’t know if I will be able to cope . . . I’m so sad.’
• Bargaining – ‘Please God, I’ll stick to my fluid restriction if you make this better.’
• Accceptance –‘This is not going to go away, so I should start to work out how to manage and enjoy my life with it.’

These feelings are natural and very common, and it is important to recognise and acknowledge them.

For some, the emotional impact can feel overwhelming. It can leave us very anxious and depressed. It can stop us from doing the things we need to do in our daily lives, and from taking pleasure in things we usually enjoy.

Depression and Anxiety are very common with CKD

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, it is important to remember that each of us has the ability to learn new coping skills and develop relationships with individuals who can provide support.

How many people with CKD are affected?

Depression affects around half of those affected by CKD at some stage. Around half of all family members will also be affected by mental health problems. This includes children, teenagers, adults and older adults.

In children and older people, symptoms are sometimes not recognised, as they are assumed to be inevitable as part of ‘growing up’ or ‘growing older’.

Any concerns about younger or older people should be discussed with a GP, who can make an assessment, provide treatment, and refer, if necessary, to a psychiatrist or psychologist who specialises in this area.

Sarah’s story

Sarah felt that her world had been turned upside down when her husband Andrew was diagnosed with CKD and had to stop work.

There was so much to worry about, from his health to their finances. She felt helpless and frightened. Sometimes she also felt angry and resentful at Andrew, and then she felt guilty. Everything started to worry her and soon she felt anxious most of the time.

Finally she told Andrew how she was feeling and together they decided to talk to the social worker at the renal unit.

They were surprised to learn how common Sarah’s experiences were among family members of people with CKD. The social worker also explained what help was available.

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. And certain things – for example, stress or other life events – can then trigger the onset of symptoms.

Adjusting to, and coping with, all the changes that accompany CKD 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 – such as at diagnosis, beginning treatment, after a transplant or when taking certain medications.

People you have got to know during treatment may become very unwell or die. Coping with other medical problems such as skin cancers or high blood pressure, or dealing with relationship break-ups or job loss can also be stressful triggers. The presence of these stresses is probably the most common reason for poor mental health in people with kidney disease.

Jane’s story

Jane wasn’t prepared for the feelings of depression and anxiety that came immediately after her kidney transplant, and for the months following. But it isn’t surprising that she was feeling like this, considering all that she’s been through.

Being diagnosed with CKD, having to wait for a kidney to become available, the stress of a big operation and also the worries she had about family and work all add up. It led to a big come down after her operation.

Depression can also be a result of physical changes

Some depression symptoms may be the result of physical changes caused by kidney failure, such as anaemia. The build up of waste products in your blood can also cause changes in:

• Behaviour – including irritability, edginess, moodiness, memory loss and confusion.
• Problems with sleep resulting in fatigue, low energy levels, depression and anger.

Many people are not aware that certain medications, such as those used to counter rejection of a transplant, can also have Depression, Anxiety and moodiness as direct side-effects.

Discuss your concerns with your nephrologist or pharmacist, and ask for a Medicines Information Pamphlet to see a full list of side-effects.

Finally, Anxiety and Depression are common, and affect many people anyway. You may just happen by chance to become anxious or depressed at the same time as you become physically ill.

There are a number of factors that can help to protect you from the effects of depression and anxiety. These include trying to have an easy-going approach to life, a social support network, support through ongoing medical and mental health care, having stable relationships, and being willing to adapt and work on problems.

What is depression?

Depression is a medical condition in which people experience a significantly low mood for a long time.

While everyone feels down from time to time, people with depression experience a persistent feeling of sadness, without reason, that cannot be shaken and that affects their capacity to get on with their daily lives. In addition to a deep sadness, other symptoms of depression may include:

• Feeling worried for no reason.
• Having difficulty concentrating on tasks or decisions.
• Losing interest in things which the person used to enjoy doing.
• Moving or talking slowly.
• Sleeping badly, or sleeping excessively, and still feeling tired.
• Either losing or gaining weight and appetite.
• Losing interest in sex.
• Thinking about killing oneself; feeling hopeless, guilty and that life is not worth living.

Dysthymia is a milder but still serious form of Depression, which can go on for years. Those affected may be able to function in their day-to-day life, but have a persistent low mood, even saying they just don’t know what it feels like to be happy.

Tomas’ story

After six years on dialysis, Tomas began waking up in the middle of the night and had trouble falling asleep again.

He was often tired and irritable at work and started making more frequent errors on the job. When he’d get home from work he lacked the energy to play sport and often didn’t feel like doing his hobbies. He started to spend his evenings on the couch, drinking beer. He felt like a failure.

Finally he went to his GP to ask about sleeping tablets. The doctor diagnosed Depression and drew up a treatment plan. Tomas and his work colleagues were relieved to know that there was something he could do to get back to his old self.

What are Anxiety disorders?

A person with an Anxiety disorder feels distressingly worried a lot of the time for no apparent reason, interfering with their ability to function and to take pleasure in life.

There are several types of Anxiety disorders.

• Generalised anxiety disorder – is characterised by worry that is persistent, excessive or unrealistic. It can be about almost anything – money, work, health, relationships or being harmed.
• Social anxiety disorder – involves intense anxiety associated with social situations. For example, someone affected may become nauseous with fear at the thought of attending a work function or a family gathering.
• Obsessive compulsive disorders – make people feel compelled to act or think in a certain way to avoid irrational feelings of anxiety. For example, someone with a clean house may become convinced that it is dirty. They might react by obsessively cleaning the kitchen, making them late for work.

Other forms of Anxiety disorders include Panic disorder and phobias – extreme fears of everyday situations, or of needles, for example.

Other symptoms of an anxiety disorder may include:

• Worrying excessively or persistently.
• Panic attacks or feeling frightened for no reason.
• Breathing fast.
• Racing heart, headaches or stomach aches.

Why can Depression and Anxiety disorders be difficult to recognise sometimes?

Some of the physical symptoms of Depression and Anxiety – such as feeling tired, poor sleep and loss of appetite – may be similar to those caused by CKD or its treatment. When the focus is on treating the kidney disease, symptoms of Depression and Anxiety may not be recognised.

Symptoms of Depression or Anxiety may also seem hard to describe. Fear of being dismissed as ‘neurotic’ or not listened to, can make people reluctant to discuss symptoms. It can take courage to talk openly about how you feel and to ask for help.

Discuss these feelings with a social worker or doctor; they can help to sort out whether it is your physical illness, Depression or Anxiety that is responsible for them. See the Life Options Factsheet, Work with your Doctor.

Sometimes we might disregard how we feel because we think that intense sadness or worry are simply to be expected with CKD. This is not true. Just because someone has kidney disease doesn’t mean they will experience actual Depression or an Anxiety disorder.

If you are concerned that you, or someone you know, may have Depression or an Anxiety disorder, and want to speak to someone confidentially, contact the SANE Help Centre or call the Kidney Health Information Service on 1800 682 531.

How Depression and Anxiety can affect you

Depression and Anxiety can affect how you make decisions regarding your treatment. As a patient on dialysis is actively involved in their day-to-day treatment regarding fluid intake and diet, you need to have a clear mind in order to make the best decisions. Depression and Anxiety can impact thinking, making decision-making difficult. 

Depression and Anxiety are not good for your physical health generally. They can affect immune function, making you more vulnerable to illness and infection. People with Depression and Anxiety report more general physical discomfort and see their GPs over twice as often as the general population. They may also affect how well people respond to dialysis.

People who are anxious or depressed are less likely to get out and exercise or to do everyday tasks. Their ability to communicate and express emotion may be affected, placing additional stress on family and friends as well as themselves.

Some of those affected are also more likely to engage in risky behaviours, in particular use of alcohol to cope with negative emotions.

Depression and Anxiety may affect physical health and lead to difficulty managing CKD treatment. There are many reasons, therefore, for seeking diagnosis and treatment.

The road to recovery

Depression and Anxiety disorders are treatable, and learning to understand them and how they are treated – especially the things you can do to manage symptoms yourself – 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.

Diabetes affects how we think and feel

Living with diabetes can be tiring and worrying for the person affected and the whole family. Diabetes means having to look after yourself every single day. There is no chance for a break. This constant pressure takes its toll, and many people experience feelings of depression and anxiety at times.

Being diagnosed with diabetes means adapting to the practical challenges of managing the condition, such as being careful with foods, checking blood glucose levels and taking insulin. A key challenge faced by people with diabetes is staying motivated to manage their condition. Some days it seems like no matter what they do, no matter how careful they have been, their blood glucose levels become very high, or swing up and down.

It is no surprise, and very understandable therefore, that some people find this emotionally demanding, and may develop mental health problems as a result.

Type 1 Diabetes

Type 1 Diabetes is mainly diagnosed in people under 40 and mostly in childhood and teenage years (although it may sometimes occur in middle aged and older people).

It is an autoimmune disease which destroys the insulin-producing cells in the pancreas, leading to a build-up of glucose in the blood stream. Over time, with the body unable to produce enough insulin, Type 1 Diabetes is detected when the body shows distress through increased hunger and thirst, excessive urination, dramatic weight-loss and overwhelming tiredness.

Type 1 cannot be prevented or managed by the food you eat and other lifestyle factors, although healthy living assists with blood glucose control. People with this form of diabetes need to check their blood glucose levels several times a day, and use insulin injections or a pump to keep their blood glucose at normal levels. They also need to adjust many other factors that affect glucose control – such as eating, sleeping, stress, physical activity and medication.

Because Type 1 Diabetes usually starts in childhood, people with the condition will often have many years gaining experience in managing it. At different times they may feel more or less motivated and able to keep their blood glucose at target levels. However, lots of people describe experiencing diabetes ‘burn-out’ due to the unceasing, and sometimes unpredictable nature of the monitoring and maintenance of Type 1 Diabetes. This can lead to Depression.

Another mental health issue for people with Type 1 Diabetes is distorted thinking about body size, especially among young women, which can lead to eating disorders.

Type 2 Diabetes

Type 2 Diabetes is mainly diagnosed in adults, usually in people over the age of 40, although it is increasingly being found in younger people. Most people with diabetes (approximately 95%) have Type 2. They are also at higher risk of developing Depression or Anxiety disorders.

Type 2 Diabetes is a metabolic disorder (that is, relating to how food is taken in and stored in the body). As with Type 1, blood glucose levels are higher than normal. The body doesn’t produce enough insulin, and can’t use the insulin it does produce effectively.

Type 2 Diabetes can usually be managed with regular physical activity, healthy eating and losing excess weight. Tablets or insulin injections are often required as well.

People are more likely to develop it if they have a family history of Type 2 Diabetes, are over the age of 40, or are not physically active.

It is also more common among people from an Aboriginal, Torres Strait Island, Melanesian, Polynesian, or Indian sub-continent background. Type 2 Diabetes often develops when a person is overweight and particularly if they have one of these other risk factors too.

Depression itself can lead to a higher risk of developing Type 2 Diabetes. Depression makes it more difficult to be physically active and eat well. The fact that this may have led to diabetes can make the depression more severe. Monitoring blood glucose levels, taking medications, learning new ways to eat and possibly needing to start injecting insulin, can lead to increased anxiety.

Gestational Diabetes

During pregnancy some women develop a temporary insulin resistance and intolerance to carbohydrate, which usually returns to normal after the birth.

More than one in five women with Gestational Diabetes Mellitus (GDM) develop Type 2 Diabetes in the following 10 years.

As well as having a greater risk of birth defects, babies of women with gestational diabetes are more likely to develop obesity, glucose intolerance or even diabetes in later life. (Women with diabetes who then become pregnant are not included in this category.) Diagnosis and learning about these risks in the future can be a shock, and making the necessary adjustments and dealing with the uncertainty can be difficult.

After diagnosis

People with diabetes, and those who care about and for them, usually experience a range of emotions in response to the illness: shock, denial, sadness, fear, anger, frustration, tension, or loneliness, and sometimes many of these at the same time. Many people also talk about a grieving for their previous health, abilities and their life before diabetes.

Martha’s story

Martha’s boyfriend was diagnosed with Type 1 Diabetes at the age of 28. He was very depressed for about a month after diagnosis and was talking of suicide.

Martha searched the Internet, giving him information about support available. ‘He didn’t use the support information but I listened when he talked, held his hand when he was upset and supported him by just being there. I was so worried about him. He’s become more positive and optimistic about the future as time has progressed’.

Living with diabetes

Some people with diabetes describe feeling frustrated, fed up, overwhelmed or ‘burned out’. They may report feeling chronically angry, guilty, or fearful. Coping with major life events as well as the daily routine of dealing with diabetes can lead to less motivation to look after yourself.

It is important to recognise and acknowledge all of your feelings. It is helpful to talk about them with friends, family and members of your health team (such as a nurse or GP). Your health worker is specially trained to help you to understand your reactions. You don’t have to feel that you are not coping by asking for help. This is an important way of coping.

It is important, too, to remember that each of us has the ability to learn new coping skills and develop relationships with people who can provide support. For many, the emotional impact can feel overwhelming and may go on and on. It can leave us experiencing anxiety and depression. It can stop us from doing the things we need to do in our daily lives, and from taking pleasure in things we usually enjoy.

Depression is not just a low mood but a serious illness. People with Depression and Anxiety disorders find it hard to do normal activities, and get on with their day-to-day life. This can have a serious impact on their diabetes care and outcomes.

Depression and Anxiety disorders are very common in people with diabetes, and affect family and friends who care for them too.

How many people are affected by mental health problems as well as diabetes?

Depression and Anxiety disorders affect up to half of those living with diabetes at some time, although not all will be diagnosed. In addition, around half of all family members will also be affected by mental health problems. This includes children and young people as well as adults and older people.

Research suggests that diabetes doubles the risk of Depression compared to those without diabetes. The chance of developing Depression also increases if diabetes complications worsen.

Aboriginal and Torres Strait Island peoples have a high rate of diabetes and mental health problems, with generally poorer long-term outcomes following diagnosis than the general population.

Why are mental health problems more common among people living with diabetes?

Feelings of depression and difficulty coping are very common among people with diabetes and family carers. While this is mostly thought to be due to the difficulty of coping with all the life changes and tasks that accompany both forms of diabetes, it may also be due to the direct effects of the illness on how we think and feel.

Depression and Anxiety disorders are medical conditions. As with many other conditions, some people are born with a genetic disposition to developing them. And certain things – for example, stress or difficult life events – can then trigger the onset of symptoms.

Adjusting to and coping with all the changes that accompany diabetes is stressful. Over time, managing diabetes (regular blood glucose checking, taking medication and insulin injections, watching what you eat, and fitting in regular physical exercise) may become stressful in itself. This can increase the risk of developing Anxiety disorders or Depression.

The good news is that these conditions are identifiable and effective treatments are available. Learning how to recognize and understand them and how they are treated – especially the things you can do to manage symptoms yourself – is a powerful way to start on the road to recovery.

Recovery means that you will be among the many people living with diabetes who have been through this experience and are leading productive and satisfying lives.

What is Depression?

Depression is a medical condition in which people experience a significantly low mood for a long time.

While everyone feels down from time to time, people with depression experience a persistent feeling of sadness, without reason, that cannot be shaken and that affects their capacity to get on with their daily lives.

For further information on Depression and its symptoms, please see the guide to Depression.

Vijay’s story

Adjusting to the news he had Type 2 Diabetes was difficult for Vijay. One year on he was feeling very down, finding it difficult to get up and get to work on time. His wife noticed but he didn’t want to talk about it.

Vijay’s evenings were spent watching TV and eating unhealthy snacks. He felt guilty about not being more use to the family and could not see how he would ever feel better. He could not sleep. His boss at work was worried about the changes he saw and persuaded Vijay to go to see his GP. Vijay agreed to see a psychologist and try some antidepressant medication.

What are Anxiety disorders?

A person with an Anxiety disorder feels distressingly worried a lot of the time for no apparent reason. This interferes with their ability to function and to take pleasure in life.

Anxiety and stress can cause large jumps in blood glucose levels. Panic attacks may also resemble hypoglycaemic episodes (when the blood sugar level falls too low).

For further information on Anxiety disorders, please see the guide to Anxiety disorders.

Rosa’s story

In the first weeks back at work after a diagnosis of diabetes, Rosa was told off by her boss for creating a distraction during a staff meeting by testing her blood glucose levels.

What he did not realize was that Rosa was anxious and fearful of having a hypoglycaemic episode (a ‘hypo’) and had trouble telling whether how she felt was related to her blood sugar level or an anxiety attack, as symptoms are often similar (for example, sweaty hands, nervousness, and shakiness).

Rosa decided she would try to explain to her boss, and ask for his support in testing her levels at work when necessary.

Other mental health problems

People with Type 1 Diabetes have a higher risk of developing an eating disorder – especially young people and young adult women.

The causes are unclear, but it may be due to a combination of underlying vulnerability, stress, concern about the effects of eating on health, plus constantly having to monitor food and carbohydrate intake and insulin.

The three main types of eating disorders are anorexia nervosa, bulimia nervosa and binge eating disorder. Diabetes Australia has a booklet specifically about this – call the Diabetes Helpline – 1300 136 588 – for more information.

Andrea’s story

Andrea was diagnosed with Type 1 Diabetes at 8 years old. Between the age of 14 and 17 her weight dropped dramatically and Andrea was hospitalised. Five years after being treated for anorexia Andrea developed bulimia. Her weight increased beyond the healthy range and with it came Depression.

After encouragement from a friend, Andrea began still-life modelling for artists. This helped her self-esteem as she realised ‘It didn’t matter what size you are, you are still beautiful.’ Andrea believes, ‘Anorexia was my way of asserting my authority over a life where I felt I had no control. My recovery was due to my own hard work at finding my way and the good old treatment of time – growing up and accepting myself for who I was.’

Anxiety disorders and Depression can be experienced at the same time as alcohol or drug problems. The guide to Drugs has useful information about dealing with alcohol and drug use when you have a mental health problem.

Like the rest of the population, of course, some people with diabetes also experience Schizophrenia, Bipolar disorder or another mental health problem unrelated to their diabetes. These conditions will have an impact on the control and management of their diabetes.

For more information about mental health problems and how they can be treated, call 1800 18 SANE (7263) or see www.sane.org

Why can Depression and Anxiety disorders be difficult to recognise sometimes?

Some of the physical symptoms of Depression and Anxiety – such as feeling tired, poor sleep and loss of interest in sex – may be similar to those caused by diabetes or its treatment, so they can be difficult to tell apart. Panic attacks can feel like hypoglycaemic episodes (and vice versa). High blood sugars may also produce some symptoms of Depression, including fatigue and changes in sleep, weight and appetite.

People with Depression or Anxiety may not realise that how they feel could be caused by a physical condition. On the other hand, people with diabetes may not realise that how they feel could be caused by a mental health problem.

Sometimes a family member can give good feedback about any change they notice. A health professional can then work out which symptoms are related to the diabetes and which to the mental health problem, and how to treat them safely and effectively.

Symptoms of Depression or Anxiety disorders may also be hard to describe. Fear of being dismissed as ‘neurotic’ or not being listened to, can make people reluctant to discuss their symptoms. It takes courage to talk openly about how you feel and to ask for help. If you are able to discuss these feelings with your doctor, they can help to sort out whether a physical or mental health problem is responsible for them.

Sometimes we might disregard how we feel because we think that intense sadness or worry is simply to be expected with diabetes. This is not true. Even though the risk of developing Depression or an Anxiety disorder is higher, it does not mean that everyone with diabetes will do so, by any means.

Symptoms of mental health problems in children and older people are sometimes not recognised, as they are assumed to be inevitable as part of ‘growing up’ or ‘growing older’. However, this is not the case. These conditions can emerge earlier or later in life.

If you’re worried about anyone’s mental health – whatever their age – encourage them to talk it over with a GP, who can make an assessment, provide treatment, and refer, if necessary, to a psychiatrist or psychologist who specialises in this area.

The impact of Depression and Anxiety disorders on physical health

People who have diabetes need to take Depression and Anxiety disorders even more seriously than others, because of the effects of these, both direct and indirect, on the course of the illness.

Depression and Anxiety disorders can affect how you make decisions regarding your treatment. As someone with diabetes is actively involved in their day-to-day treatment – monitoring blood glucose, medication, eating plan, physical activity, and so on – they need to have a clear mind in order to make the best decisions.

If you are depressed and have no energy, you are likely to find such tasks as regular blood glucose checking more difficult. If you feel so anxious that you can’t concentrate, it will be harder to keep up with a good eating plan. You may not feel like eating at all or might over-eat. This will, of course, affect your blood glucose levels.

People who are anxious or depressed may find it more difficult to get motivated to do physical activity or even everyday tasks. Their ability to communicate and express emotion may be affected, placing additional stress on family and friends as well as themselves. Some of those affected are also more likely to engage in risky behaviours, in particular excessive use of alcohol and drugs.

Depression and Anxiety disorders are not good for your physical health generally. They can affect immune function, making you more vulnerable to illness and infection. People with Depression and Anxiety disorders report more general physical discomfort and see their GPs over twice as often as the general population.

Depression may also make medical symptoms, such as pain, feel less tolerable than they usually would be for that person.

All of these factors, then, mean it is especially important to look after your mental as well as physical health.