In a recent survey of members from the Responsum for CKD community, we asked people living with chronic kidney disease (CKD) to reflect on their experiences. What we heard was honest, raw, and powerful—and it underscored the deep value of peer support and sharing personal stories.

Many respondents recalled the fear that followed their diagnosis. Some said it felt like “a death sentence,” and described themselves as feeling “terrified,” “shocked,” and “overwhelmed.” Over time, however, they’ve adapted—making lifestyle changes, finding their footing, and, most importantly, realizing they were not alone.

Diet changes were a recurring theme. Most people said they shifted toward a more balanced, plant-based approach, often after trying multiple variations to figure out what worked for them. A few made drastic dietary changes right away but had to backtrack and reintroduce some animal protein to feel well again. Their experiences show that CKD management isn’t one-size-fits-all—it’s personal, and trial and error is part of the process.

Respondents also spoke of:

• Loneliness,  
• Struggling  with dialysis, 
• Wishing they’d been diagnosed earlier, and 
• Wishing they’d paid closer attention to their kidney health before it became a problem.

Some mentioned subtle signs—like foamy urine—that they didn’t know to watch for, as well as symptoms like dry, itchy skin and constant fatigue that affect their quality of life. Yet alongside these challenges, many expressed that their illness had become more manageable with time, knowledge, and support.

When asked what advice they’d give to others with CKD, a few themes stood out: 

• Bring your questions to your nephrologist, but also do your own research using reliable sources, from university websites to other specialists.
• Stay on top of your medical appointments. 
• Don’t be afraid to connect with others who understand what you’re going through.
• Advocate for yourself: urge your nephrologist to help you discover the type and source of your CKD, so you can:
  • Receive appropriate care, 
  • Protect your family, and 
  • Optimize your quality of life.

Hearing these voices reminds us that, while CKD can be isolating, shared experiences offer strength. Peer support isn’t just comforting—it can be life-changing. Your story might be the one someone else needs to hear.