The Invisibility of Chronic Kidney Disease

Chronic kidney disease (CKD) affects physical, mental, and emotional health. Yet, many people with CKD often have no visible signs of illness. You may have even been told, “You don’t look sick.” Because you may not look sick, others often overlook and misunderstand CKD.

Diseases that others cannot see are often called invisible illnesses. Even though CKD is not obvious to others, the daily struggles of living with CKD are real.

Invisible illness and isolation

Silently dealing with CKD can prevent you from getting needed help and support. Living with invisible illness can leave you feeling isolated. But explaining CKD to others can be scary and exhausting.^1,2

If you choose to share your story with others, it may help lighten the burden of living with CKD. Here are suggestions to help you discuss CKD with others.¹

• Keep it simple – Use terms that are easy to understand when describing your condition.
• Share trustworthy resources – If someone is interested in knowing more about CKD, direct them to a website you trust.
• Be open about your limitations – Share how CKD affects your energy level, food choices, and other daily activities.
• Ask for help when needed – Chronic illness requires a lot of daily effort. Allowing others to help will give you more energy to do what you enjoy.

Invisible illness and mental health

Living with chronic illness can have serious effects on your mental and emotional health. Untreated mental health problems can contribute to worse health outcomes.³

Feelings of grief, fear, anxiety, anger, helplessness, and sadness are common. Dealing with these feelings alone can be overwhelming. A counselor can help you develop strategies to deal with the challenges of living with chronic illness.³

If sadness and hopelessness last more than a couple of weeks and interfere with your daily life, you may have depression. Talk to your doctor about treatment options to support your mental and emotional health.³

Risks of invisibility

Lack of healthcare provider awareness is a dangerous consequence of invisible illness.^4,5

A 2022 study of more than 57,000 Swedish patients confirmed the problem of underdiagnosis of CKD. In this study, only 23 percent of people who met the laboratory criteria for CKD had a diagnosis of CKD in their medical records. Of these patients, 20 percent received medicines that could damage their kidneys. Patients whose doctors knew about their kidney disease were less likely to receive drugs that could harm the kidneys.^4,5

Coping strategies

Living with chronic kidney disease can cause physical and mental stress. Here are 5 steps you can take to help cope with the daily challenges of CKD:⁶

• Seek support – Social support can help you live each day to the fullest.
• Take control – Support your well-being by choosing nutritious foods, staying active, taking your medicine, and allowing yourself time to rest.
• Find joy – Plan activities that you enjoy.
• Set goals – Having both short-term and long-term goals can help you stay motivated.
• Let go – Give yourself permission to say no to activities that do not add value to your life.

Community support

A community of other people with CKD can give you a safe place to share your story. You can discuss your diagnosis, daily challenges, and tips for living with CKD. Giving and receiving support from people that understand what you are going through can be a great source of comfort and inspiration.

You do not need to suffer alone. CKD can affect every aspect of your daily life – your schedule, diet, work, social life, and much more. Sharing your daily challenges with others can help you feel more supported.

Chronic-Kidney-Disease.net is a great place to connect with others in the CKD community. You will find helpful articles and a community of people who understand that your kidney function does not define you.