When patients seek medical attention for chronic kidney disease (CKD), they want relief from the physical unease it causes. But many people do not realize there is psychological unease that results when diagnosed with a chronic disease like CKD. Caring for your mental health is just as important as caring for your physical state. Recognizing emotions that are common to other patients with CKD can help you feel less isolated and get you the support you need.
Patients are able to tell their doctors what they are physically feeling: pain, fatigue, dizziness, etc. However, many people do not feel comfortable telling their healthcare team about what they are mentally feeling. Your psychological recovery is an important part of managing CKD. The following are common emotions patients experience when they have been initially diagnosed with a chronic illness, although these emotions can be present at any time during treatment.
Fear and anxiety are common emotions when you have been diagnosed with a chronic disease like CKD. We feel our own bodies have betrayed us. Functioning kidneys are something you’ve taken for granted. Now, you are no longer in control of your renal process. You must rely on dialysis to do your kidneys’ job. You will wonder how this disease will affect you. You may worry about its impact on how you care for and provide for your family.
Treatment for CKD sometimes compounds the anxiety. Whether you will undergo hemodialysis or peritoneal dialysis (PD), each requires surgery to create an access. Choices need to be made if you will go to a clinic for dialysis or be treated at home. You may worry about the disruption to your family life, especially if you opt for treatment at home. Will your loved ones adjust to seeing you attached to a machine? Will they dislike the constant reminder that you are not as healthy as you once were?
When something bad happens to us, we try to cope. We make decisions that can help us adjust to or understand what has happened. But when the trauma is severe and threatens to overwhelm us, we sometimes deny anything has happened. Although this occurs in extreme cases, this can happen if you have been diagnosed with a chronic illness. You may refuse to accept the fact you are ill, or if you do, you may refuse to believe you are seriously ill. Perhaps you do not believe the recommended medications and treatments are necessary.
Feelings of anger are common among CKD patients. We are mad that this has happened to us. We are mad at ourselves for allowing our health to deteriorate to this point. Sometimes we are mad at the medical community for not taking better care of us or not diagnosing the disease earlier. Many patients direct this anger at their family members or spouse. Anger and resentment can build to the point where it strains the relationship between you, your health care team and your family.
Feeling down is a normal part of chronic kidney disease. Lack of energy and nausea are common symptoms of CKD. But when we are feeling mentally down, often we feel sad our bodies are not functioning as they should. We all go through ups and downs in life. But if these feelings develop into hopelessness, despondency or despair and last over two weeks, you should tell your doctor. This may be a sign of depression. If you feel you do not wish to live any longer or have thoughts of ending your life, you must tell someone immediately.
CKD can overwhelm a patient. There is new information to become aware of, a new treatment plan to begin. Your energy will be directed to your treatment and physical well-being. This can be exhausting. But you must also take control of your mental state.
You cannot allow feelings like fear or anxiety to bulldoze your mental landscape. Knowledge about chronic kidney disease and dialysis can help you become familiar with your illness and its treatment. You won’t feel as fearful or anxious if you know what to expect. Feeling calm can help you sort out things and you’ll be able to deal with your disease more effectively.
Feelings of denial are a severe problem in the long-term prognosis for your health. Denial leads to what is called “non-compliance”—that is, disregard for your healthcare team’s instructions regarding dialysis treatment, diet and fluid intake. Healthcare workers often see patients who come to dialysis in distress. They have missed several dialysis treatments or have not been following their fluid requirements. They often rely on dialysis to make them feel better. But sometimes dialysis cannot reverse the effects of non-compliance. Hospitalization may be required. Do not let this be you. CKD is a serious illness. Listen carefully to your healthcare team and follow their recommendations. If you do not understand something, ask questions.
Anger can isolate and prevent you from seeking help or solace from people who care about your health. Although expressing your anger can help it diminish, it may lead to more frustration because you do not understand the root of it. You may be lashing out at people who are not the cause of your anger. This can strain relations with those around you. Talking about why you are angry can help you determine its cause.
Depression can affect how you make decisions regarding your treatment. Since a patient on dialysis must be actively involved in their day-to-day treatment regarding fluid intake and diet, you must have a clear mind in order to make the best decisions. Depression can make you put off decisions, or even purposely make unwise ones. If your doctor diagnoses you with major depression, he may prescribe some anti-depressants. But first, he must know what you are feeling. He cannot know unless you tell him.
Talking to someone about your emotions is essential. Do not feel that you must find a way to deal with this by yourself. Most patients benefit from discussing their feelings with their healthcare team, family, friends and other CKD patients. Your social worker can refer you to a support group. A support group can help you put things in perspective.
The Internet can also help. Not only can it educate you about your condition and treatment, it can put you in touch with others who are in a similar situation. Discussion forums , like the ones here at DaVita.com, are populated with patients in various stages of chronic kidney disease. Here, you can read posts about problems other patients encounter, or you can read about their triumphs as they adjust to their diagnosis. You can share your story, if you so choose. Just know that the message boards offer an alternative to face-to-face conversation, and are available at any time of the day or night.
Help is out there. You just need the courage to make the initial contact.
This site is for informational purposes only and is not intended to be a substitute for medical advice from a physician.
Please check with a physician if you need a diagnosis and/or for treatments as well as information regarding your specific condition. If you are experiencing urgent medical conditions, call 9-1-1