When Kim Betts was 59, she was diagnosed with advanced chronic kidney disease (CKD) after a combination of two drugs she was on, the blood pressure medication losartan and the anti-inflammatory drug meloxicam, caused her to go into kidney failure. “By the time I was diagnosed, I only had 5% kidney function, and I needed to go on dialysis,” recalls the 61-year-old former nurse, who lives in Nashville, Tennessee.
It was a scary – and lonely – time for Betts. She felt like she had very few people to turn to. A triathlete, most of her friends were bikers and runners, like her. “Most of my social life revolved around physical activity,” she says. “But I was so exhausted all the time I couldn’t even make it to church. I felt so isolated.”
Social support is crucial if you have CKD and are on dialysis. Research suggests that it improves quality of life and increases the likelihood that you’ll stick to treatment. Here’s a closer look at why it’s so key and what you can do to get the support you need.
Why Social Support for Dialysis Patients Is Key
Dialysis takes a toll, not just on your body, but on your mind and emotions, too. “It’s a huge life change,” says Marissa Argentina, patient programs director at the National Kidney Foundation. One 2020 study of 150 dialysis patients found that most reported symptoms of depression, anxiety, and stress. “If you do dialysis at a center, it’s a huge time commitment that eats up several hours three times a week. If you do it at home, it takes a lot of learning and adjustments, not just for you, but for your family members as well.”
Here are some ways that social support can help:
Shared experiences. If you talk to someone else on dialysis, you’ll feel less alone. “It helps to speak to another patient who is going through the same lived experience,” says Argentina. “It’s a whole other perspective that your loved one, and medical team, can’t provide.” Other people on dialysis can also share what’s helped them cope, both physically and emotionally. “Oftentimes, many patients feel guilt that they’ve done something to cause their advanced CKD,” says Argentina. “It can be helpful to talk to others about that and realize that they’re not at fault.”
Better quality of life. A 2021 study published in the journal Kidney Medicine found that seniors with strong social support had fewer physical problems, better quality of life, and better cognitive function than those who reported feeling more isolated. “When you have others around you, it helps to reduce stress so that you feel better about yourself,” says Argentina. “It also motivates you to go out into the community and do activities, which improves both your physical and mental health.”
More day-to-day support. If you have friends and loved ones around, they can help you with daily activities that may be more challenging, like cooking, running errands, and getting to doctor’s appointments. “It makes it easier for you to do things that are good for your health, like eat right, get exercise, and stay up-to-date on any medical appointments, including dialysis,” says David Goldfarb, MD, a nephrologist at NYU Langone Health in New York City.
A sense of control and purpose. If you are on dialysis for kidney disease, it may seem like much of your health is out of your control, says Argentina. But one way you can feel more empowered is through advocacy. Certain organizations, like the American Association of Kidney Patients, offer ways for people with CKD to share their voice, story, and life experiences with everyone from members of Congress to local hospitals. “It can give you a sense of purpose, which is important for many dialysis patients,” says Argentina.
Where to Go to Find Support
If you are on dialysis, your life is already very complicated. You may not know where to go to find support and not have much time to research it. These resources can help.
NKF Peers. This is a program run by the National Kidney Foundation. It connects kidney patients with a trained mentor. “It’s another patient who will share their personal experience on dialysis and offer advice,” says Argentina. The National Kidney Foundation also offers a support line at 855 NKF-CARES (855 653-2273).
American Association of Kidney Patients (AAKP). The AAKP is the nation’s largest independent kidney patient organization. It focuses on patient education and advocacy. You can connect with other people with CKD who are on dialysis through the group’s many walks, national patient meetings, and advocacy events.
Renal Support Network (RSN). This group offers online support groups as well as a peer support group and a helpline.
American Kidney Fund. This organization has a Community Resource Finder where they can connect you to local support services such as medical care, food pantries, housing and transportation assistance, and even help with the payment of medical bills.
Your local dialysis center. Every center must have a social worker on staff, says Goldfarb. Take advantage of them. “They can help you address emotions such as fear and anxiety, but they can also help you with practical matters, too, like helping you line up transportation, home health aides, and meals,” he points out.
You can connect to other patients there, too. Kristal Higgins, 42, says she spends most of her time during dialysis sessions in conversation with other people. “Everyone sitting there is in the exact same situation,” says Higgins, who lives in Olive Branch, Mississippi. “It helps me to talk to them. I feel less alone.”
Caring for Caregivers
Higgins relies on her husband, Ernest, to provide her with support while she is on dialysis. “His mother was also on dialysis, so he is very supportive,” she says. “If he wants to go out to dinner and I’m wiped from a session, he gets it and suggests we order in,” she explains. “It’s a relief to me that he is so understanding.”
Caregivers play a huge role in the lives of their loved ones on dialysis. They make sure they get to appointments, help them with daily activities, and serve as a shoulder for them to cry on when they hit a rough patch. “Caregivers stand right alongside dialysis patients to help them fill in gaps for needed care,” says Argentina. But they also need support too, she adds.
One good resource is the National Kidney Foundation’s NKF Peer program mentioned above. They can connect you with other caregivers who have been in the same situation. “Chronic kidney disease can be difficult for both patients and caregivers because you can’t always see the effects on your loved one,” says Argentina. “They may look fine but feel awful, both physically and mentally. That’s why it’s so important to make sure you have good communication between the two of you.”
It Takes a Village, Truly
As Betts came to terms with her kidney failure, she realized she needed to create her own support system to see her through dialysis. She turned first to her mother and her ex-husband. “They were both there for me, emotionally and financially,” she says. “They got me out of the house occasionally, brought me my favorite takeout, and encouraged me with lots of phone calls and texts when they couldn’t physically be there,” she says.
But as the first months and then years went by, Betts realized that she needed more of a network. She began to share her story with friends and acquaintances on social media sites like Facebook. When she posted that she was having a difficult time finding a kidney donor, a woman in her running group, Megan Connor, offered to get tested to see if she was a match. She was, and Betts underwent a successful kidney transplant in January 2025.
“It’s one of those situations where you find support in the most unexpected places,” muses Betts. “I never thought I’d find support on social media – but here I am with a healthy kidney to prove it.”
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Kim Betts, 61, retired nurse, Nashville, Tennessee.
Kristal Higgins, 42, CKD advocate, Olive Branch, Mississippi.
David Goldfarb, MD, nephrologist, NYU Langone Health, New York City.
Marissa Argentina, MSW, patient programs director, National Kidney Foundation.
Clinical Epidemiology and Global Health: “Correlation of self-management and social support with quality of life in patients with chronic kidney disease undergoing hemodialysis: A cross-sectional study from Kerala, India.”
Healthcare: “Social Support and Adherence to Treatment Regimens among Patients Undergoing Hemodialysis.”
Florence Nightingale Journal of Nursing: “Psychological Symptoms in Patients on Dialysis and Their Relationship with Spiritual Well-Being.”
Kidney Medicine: “Social Support in Older Adults With CKD: A Report From the CRIC (Chronic Renal Insufficiency Cohort) Study.”
National Kidney Foundation: “NKF CARES: Patient Information Center.”
American Association of Kidney Patients: “Programs and Events.”
Renal Support Network: “Renal Support Network.”
American Kidney Fund: “Community Resource Finder.”
