Being diagnosed with a rare disease or chronic condition like chronic kidney disease (CKD) can feel like everything you thought you knew about your life has suddenly changed. You may be struggling with emotions like shock, sadness, fear, or even anger. These feelings are entirely normal—and more common than you might think. Emotional resilience is key to living well with a complex health condition, and support is available to help you find your footing again.

Facing Initial Shock and Grief

After receiving a serious or unfamiliar diagnosis, it’s normal to feel emotionally frozen or flooded. Shock often gives way to grief—a sense of mourning for the health, plans, or freedom you feel you’ve lost. This kind of loss is real and deserves acknowledgment.

To help you process these early emotions, consider expressive outlets like:

• Journaling, 
• Speaking with a trusted friend, or 
• Joining a peer support group like our own Responsum for CKD Community Chat. 

Organizations such as the National Kidney Foundation and NephCure Kidney International offer forums and meetups where you can connect with others who understand what you’re going through.

Managing Anxiety and Uncertainty

A rare or progressive condition often comes with more questions than answers, leading to a deep sense of uncertainty. You may wonder what this means for your independence, finances, or relationships. It’s easy to feel anxious or overwhelmed.

Practical coping strategies—such as setting small, manageable goals, using breathing exercises, or focusing on what you can control—can help reduce anxiety. For guided meditations tailored to stress and chronic illness, you could try mobile apps like:

• Headspace, 
• Calm, and 
• Insight Timer. 

If anxiety persists or becomes debilitating, it may be time to consult a mental health professional. Many therapists now specialize in chronic illness, and telehealth options such as BetterHelp, Talkspace, and Amwell make access easy, though not necessarily free, if you don’t have providers nearby. Some platforms accept insurance while others offer discounts for those who are eligible.

Getting the Help You Need

You are not alone, and help is available. Your care team may be able to refer you to a social worker, therapist, or hospital-based support group. The National Alliance on Mental Illness (NAMI) and Mental Health America (MHA) can help you locate free or low-cost providers, some of whom specialize in medical trauma and grief.

For kidney-specific support, The American Association of Kidney Patients (AAKP) offers counseling resources and educational webinars, while rare disease communities (via Global Genes and NORD) provide emotional support tools and patient navigators.

If you notice signs of depression—persistent sadness, hopelessness, or withdrawal—please reach out. A call to the Suicide & Crisis Lifeline (988) or visit to a trusted health provider can be the first step toward healing.

Remember, asking for help is not a sign of weakness. It’s a courageous and essential act of self-care.