If you have kidney disease and have experienced feelings of stress, depression and anxiety, you are not alone. We often talk about the effect kidney disease has on the body but living with kidney disease (whether you have chronic kidney disease (CKD), are on dialysis, have a transplant or care for someone with kidney disease) can be mentally challenging.

Living with kidney disease can take a toll on your mental and emotional health. The stress of taking lots of medicines, thinking about what you can eat or being on dialysis can be overwhelming. It is normal to have emotional ups and downs from time to time, but when those feelings become more frequent or more serious, getting help from a professional can make it easier for you to cope and feel less overwhelmed.

How does kidney disease affect mental health?

Maintaining good mental health is a struggle for most people but can be even more difficult if you have kidney disease. Depending on your stage of kidney disease, you may face added stressors in your life that impact your mental health. You may feel like there are so many things that you are being asked to change or do without, which may feel overwhelming.

The more advanced your stage, the more likely you are to experience impacts to your mental health. If you are on dialysis, you may experience a great deal of stress. Some of these stressors may include:

•     Financial burden of dialysis
•     Time commitment for dialysis
•     Feeling like a burden to others
•     Fearing that dialysis may cause pain
•     Unable to have restful sleep
•     Changes in employment
•     Eating restrictions
•     Worrying about dialysis impacting your family, work, social and love life.

Kidney disease and its treatment can make you feel physically unwell, which can affect your mental health and your ability to respond well to stressful situations. To add to this, if you are mentally unwell, this can worsen your kidney disease. This is because your mental health can influence your physical health and may affect your eating habits, sleep, energy level and your ability to stay on treatments prescribed by your doctor.

“It’s okay to feel what you are feeling. Every feeling that you feel is valid. Don’t beat yourself up for feeling angry or sad, or whatever you are feeling at the moment. It is valid.”

-Person living with kidney disease

COVID-19 and mental health

The COVID-19 pandemic has affected the lives of all people, especially people living with kidney disease. New challenges and fears surrounding the pandemic can increase your stress and anxiety. If you go to a dialysis center for treatment, this can increase your stress and anxiety of being exposed to COVID-19. If you have a transplant, you may have a weakened immune system and fear complications of getting infected with COVID-19.

Social distancing may also increase feelings of loneliness and isolation. If you are struggling with your mental health during the pandemic, you are not alone. There are people who care and resources available to help you during this time. Talk to your doctor or social worker about how you are feeling. You can also learn how to manage your mental health through self-care and self-help.

What mental health issues are common with kidney disease?

Depression, anxiety and other mental health issues are common among people living with kidney disease.

Depression

Depression is a mental health issue that has a negative effect on the way you feel, think, and act. It can cause you to lose interest in activities you once enjoyed. The symptoms of depression differ for each person and may overlap with the side effects of kidney disease and kidney disease treatment. Some of the symptoms include:

•     Depressed mood most of the day
•     Reduced interest or loss of pleasure in almost all activities
•     Major weight change or increase or decrease in appetite
•     Sleep issues (insomnia or hypersomnia)
•     A slowing down of thought and decreased physical movement
•     Fatigue or loss of energy
•     Feelings of worthlessness
•     Reduced ability to think or concentrate, being indecisive
•     Repeated thoughts of death, repeated thoughts of considering or planning suicide without a specific plan, or a suicide attempt or specific plan for committing suicide

Suicide Prevention: If left untreated, depression can lead you to have thoughts of hurting yourself or that you would be better off dead. If you are having thoughts of death or suicide, reach out to someone you trust, whether it is a friend or family member. Know that you are not alone and there is someone that you can speak to. If you or a loved one feel overwhelmed and have thoughts and feelings like you want to harm yourself or others, call 9-1-1. The National Suicide Prevention Lifeline offers free, 24/7, and confidential support for anyone experiencing a mental health crisis or emotional distress.

•     Website: https://suicidepreventionlifeline.org/
•     Phone Number: 1-800-273-8255

Anxiety

Anxiety is a reaction your body may have to stress. It can be helpful in some situations by warning and preparing you for danger. But if you feel intense fear or are extremely anxious on a regular basis or these feelings get in the way of your normal activities, it is important to let your doctor and social worker know so you can get treatment to help you feel better.

There are different types of anxiety. Some of them include:

•     Generalized anxiety: intense fear and worry for little to no reason
•     Panic disorder: occurs when you experience repeated panic attacks. Panic attacks are sudden and intense fear with physical symptoms such as heart racing, difficulty breathing, sweating and feelings of terror.
•     Agoraphobia: fear and avoidance of places and situations that might cause feelings of panic, feeling trapped, feeling helpless or embarrassed. This condition can make it difficult for you to leave your home.
•     Social anxiety: intense worry about daily social interactions
•     Phobias: intense fear of a specific situation or object

If you are feeling any of these symptoms of anxiety, talk to your doctor or social worker.

Drugs and alcohol

At times, people may turn to misusing drugs and alcohol as a way of coping with stress and difficult feelings. Overusing drugs and alcohol is dangerous. It can lead to addiction and cause other physical health, relationship, work and financial problems. When you are receiving treatment for kidney disease, you likely have several medicines that you take every day. It is important to work with your doctor to make sure you are taking your medicine just as your doctor prescribes.

If you are on dialysis, this may be a source of pain that can impact your quality of life. Your doctor may prescribe medicines to treat your pain. It is important to work closely with your doctor and have continuing conversations about a pain management plan that is best for you.

The Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline is a free, confidential, 24/7, 365-day-a-year treatment referral and information service for people and their loved ones facing substance use and mental disorders. Visit the website or call the toll-free line for more information.

•     Website: https://www.samhsa.gov/find-help/national-helpline
•     Phone Number: 1-800-622-4357

Where do I go for help and treatment?

It can be hard to handle the stress and challenges that come with living with kidney disease. But just as you care for your physical health, it is also important to care for your mental health. There is no shame in asking for help. The good news is you are not alone. There are people and resources available to help you cope in healthy ways.

Talk to your social worker

Social workers can provide strategies to help you manage the challenges you are facing in your life. If your dialysis clinic has a social worker, they are the person you can turn to when you are struggling with mental health. Social workers are trained to connect you with the proper resources in your area. They are there to help you. Social workers also help communicate your mental health needs with your doctor.

Try self-help and self-care

There are many resources and tools you can access on your own for self-help and self-care.

•  Books: Read a self-help book on mental health to gain a better understanding of why you might be feeling the way you feel. They are available online and in print.
•  Exercise: Exercise may improve your mental health. It may reduce the feelings of depression and anxiety and improve the way you think, learn and remember things. For some, it may be hard to exercise depending on your condition and physical health. Always talk to your doctor before starting a new exercise routine.
•  Kidney-friendly eating: Watching what you eat and drink can help you stay physically and mentally healthy. Kidney Kitchen provides information on how to eat for different stages of kidney disease and helps you make positive food and fluid choices.
•  Religion/spirituality: Connecting with your religion and spirituality may serve as a valuable way to cope with mental health issues. Your faith community can provide a group of people that you can rely on when you are feeling down.
•  Sleep: Poor sleep affects mood, energy, attention span and your ability to think clearly. Try to go to sleep at the same time every night and wake up at the same time every morning. Avoid electronics at least an hour before bed to improve sleep and avoid long naps during the day.
•  Social network: Share how you are feeling with someone you trust. This can include family members, friends and other loved ones. These people can encourage, support and help you feel better.
•  Support groups: Join one of the many in-person and online support groups available across the country. These groups serve as a safe space to share what you are feeling with others who may be going through a similar situation. Your clinic may run groups for those with kidney disease or provide suggestions for other groups you can join.

“Keep going and try to stay strong. One day you may not be feeling good, but the next day you might be better. Just keep going.”

-Person living with kidney disease

How to get professional help

Professional treatment for mental health depends on how severe your issues are and what works best for you. There are two main types of treatment available: therapy and medicine. It is important to work with a qualified mental health provider to find the right treatment plan. Mental health providers include psychologists, psychiatrists, social workers, therapists and counselors. They will help diagnose your mental health condition and provide treatment.

Therapy or counseling: involves talking with a mental health provider about your condition, feelings, thoughts and behaviors. For many people, therapy alone may be the best option for treatment.

One type of talk therapy that is effective at treating depression, anxiety and drug and alcohol overuse is cognitive behavioral therapy (CBT). This therapy uses different strategies to change your thinking and behavior patterns.

You have several options for finding a mental health provider:

•   Ask your doctor or social worker for a referral or recommendation
•   Ask your health insurance company for a list of covered providers
•   Ask a trusted family member, friend or religious leader for recommendations
•   Check out the list of resources below for professional organizations that provide directories of mental health providers across the country

Seeking help for mental health can be a hard process. To add to that, the obstacles that minority groups face on a daily basis can make it even more challenging. The chart below lists organizations that offer help for people of various backgrounds and identities.

Talk to your doctor about medicine

There are many safe and effective medicines to help when you are struggling with mental health issues. Medicines help manage your symptoms. There are many medicines available, but the most common are:

• Antidepressants: treat depression, but can also treat anxiety and other conditions
• Anti-anxiety: treat anxiety disorders

A mental health provider will work with you to figure out which medicine is best. Some medicines may interact with your treatment for kidney disease. It is important to work closely with your mental health provider and kidney doctor to make sure you are on the best medicine to treat your condition.

Talk to your doctor about medicine

There are many safe and effective medicines to help when you are struggling with mental health issues. Medicines help manage your symptoms. There are many medicines available, but the most common are:

•     Antidepressants: treat depression, but can also treat anxiety and other conditions
•     Anti-anxiety: treat anxiety disorders

A mental health provider will work with you to figure out which medicine is best. Some medicines may interact with your treatment for kidney disease. It is important to work closely with your mental health provider and kidney doctor to make sure you are on the best medicine to treat your condition.

“Persevere, don’t give up, and seek help. If the first person you go to doesn’t give you the help you need, look for someone else…don’t stop until you feel you get the help that you need.”

-Person living with kidney disease

Why you should get help for mental health

When you are having trouble coping with difficult situations, you may not seek help. Why is this? If you are physically injured, you will see a doctor for help. But why is it difficult to seek help from a professional when you are having trouble with your mental health?

Attitudes and beliefs about mental health differ across cultures. Some of these attitudes and beliefs can be negative and lead to stigma. Stigma is when a person is labeled by their illness and are no longer seen as an individual but as part of a stereotyped group. Negative attitudes and beliefs toward this group create prejudice. This may lead to negative actions and discrimination.

Stigma around mental health can make you feel bad about yourself and prevent you from getting the help you need to feel better. Here are some common reasons you may not ask for help when you are struggling with your mental health:

•    It is hard to admit you cannot handle this on your own
•    You think you are being a bother
•    You feel weak and that you should be able to “tough it out”
•    You believe the problem will eventually just go away on its own
•    You believe this is just the way it is and there is nothing that can be done about it
•    You believe mental health professionals are for “crazy” people
•    You do not realize you are having a problem
•    You do not know where to go for help
•    Getting help from a professional costs too much
•    No transportation to get to appointments

You may believe one or more of the reasons listed above but it is important to be kind to yourself. Seek help from someone you trust. Support is available to help you overcome stigma and get the treatment you need for your mental health.

Advice from patients and professionals

Elle Lee, LCSW began her career as a licensed therapist after experiencing kidney failure from IgA Nephropathy in 2009. While on peritoneal dialysis, she experienced worries, stress, and emotional struggles that are common among people with kidney failure, which motivated her to become a therapist to help people cope better.

Elle joins AKF to share tips on how people living with kidney disease can better safeguard their mental health.