When Your Caregiver Is in Denial About Your Kidney Disease
Disclaimer: This article is for informational purposes only and is not intended to be a substitute for medical advice or diagnosis from a physician.
If you live with kidney disease, you’re already familiar with the symptoms and feelings it can cause for you. But the emotional side effects you may have experienced since diagnosis — fear, anger, sadness, denial — could be felt by your dialysis care partner, too.
Your care partner may fear losing you, or losing the quality of life you both enjoyed before you needed dialysis. Sometimes care partners of dialysis patients use denial as a way to protect themselves from a reality they’re not yet ready to accept.
What is denial?
Denial can be described as a refusal to accept something that is happening, whether it’s happening to yourself or happening to someone you know. If your care partner is in denial, he or she may pretend that you don’t really have chronic kidney disease (CKD) or that you will get better over time. Denial is a way to protect ourselves from pain, hurt or suffering. If in denial, your care partner might appear calm, relaxed and even unemotional or indifferent about your health condition.
What are some reasons my care partner is in denial about my illness?
People may be in denial about anything that makes them feel vulnerable or threatens their sense of control. Your care partner may be afraid of losing you, or may fear the lifestyle change that results from your treatments, whether you do in-center hemodialysis, home hemodialysis (HHD) or peritoneal dialysis (PD). By practicing denial, your care partner is temporarily insulating himself or herself against something that’s sorrowful or daunting to think about at the moment.
There is a time when denial can actually be a healthy coping mechanism to adjust to bad news. Your care partner may need several days or weeks to process the facts about your CKD and how your lives will change as a result. As time goes on, your partner may begin to absorb the reality of the situation and approach it more rationally. However, if denial continues after a prolonged period, it can paralyze a person when action is necessary, especially when a loved one is sick and needs treatment.
What do I do when denial becomes a problem?
If your care partner stays in denial for more than a couple of months, he or she may become frustrated with you and withdraw from people who want to talk about your disease. If some time has passed and you sense that your care partner is stuck in denial, you may want to suggest the following strategies:
- Ask him to talk about his fears about your kidney disease diagnosis and dialysis treatment.
- Try to identify any irrational beliefs your care partner may have about your kidney disease.
- Suggest that he or she confide in a trusted friend and/or support group.
- Include your care partner in discussions with your nephrologist, nurse, social worker or spiritual counselor.
- Learning about kidney disease and its many treatment options can go a long way toward reassuring your care partner. The Kidney Smart℠ program offers classes for people diagnosed with kidney disease and their family members. Sign up for a class together.
Understanding your care partner’s denial
Denial is a normal and common way to cope temporarily with overwhelming situations. Care partners of dialysis patients may use denial as a way to avoid thinking about the realities of kidney disease until they are ready to process the information. If your care partner’s denial persists, talk to your nephrologist or social worker. Your care team is trained to support you and your care partner. You may want to ask for a referral to a family counselor as well. A positive mental outlook is an important part of your care and is essential to you and your care partner’s quality of life.
