IgA nephropathy is difficult to predict. But there is one thing the experts know. People with strong emotional and social support systems tend to have better long-term outcomes. And it’s best to live your life to the fullest no matter how kidney disease affects you.

“Whether it’s skiing, knitting, or going to group soccer games, it’s important to keep as much of your life normal as possible,” says Susan Rubman, PhD, a medical psychologist at Yale Medicine. “That’s what allows us to feel like whole people and not like people with an illness.”

Keep your doctor informed about daily challenges. Let them know if you feel like depression or anxiety is isolating you from the outside world. Together with the help of your medical team, you can take steps to stay connected.

Meet people through peer support for IgA nephropathy

Most people are diagnosed with IgA nephropathy between the ages of 20 and 30. And you may have to think about things a little differently than other people your age. But even if you’re older, living with chronic kidney disease can set you apart from your friends and family.

“It can be isolating if you’re experiencing symptoms or limitations that people just don’t understand,” Rubman says.

For example, you may be on a low-sodium diet, need to limit fluid intake, or need long-term dialysis. You may be worried that you will need a kidney transplant someday, or perhaps you have already had one.

You may feel more comfortable when talking to people who are facing similar health problems. That’s called peer support, and studies show it can benefit people with all kinds of health problems.

There is more than one way to find people who share your condition or a similar one. One place to start is your doctor’s office. Ask if you can talk to a patient educator or patient advocate.

Rubman’s clinic offers meetings with “ambassadors.” Those are other people with firsthand knowledge of life with chronic kidney disease, including those on dialysis or who have had a transplant.

“People who have lived that experience have tremendous credibility,” Rubman says. “Sometimes even more so than the best-intentioned professionals.”

Emily Duggan, PhD, is a neuropsychologist and assistant professor at Johns Hopkins School of Medicine. Duggan suggests meeting people who live in her area. They can give you advice about what life with chronic kidney disease is like and what resources are available in your community. “This is a wealth of knowledge that even her doctors or nurses might not have,” she says.

To find these people, search online for “kidney support groups near me.” You may be surprised at the options that appear. You can also find in-person or virtual support groups through the following:

• IgA Nephropathy Foundation
• National Kidney Foundation
• American Association of Kidney Patients
• Facebook groups or other social networking sites

The National Kidney Foundation offers a mentoring program called NKF Peers. You can chat on the phone with someone who has kidney disease or become a mentor yourself. Visit the National Kidney Foundation website for more information.

Stay Engaged in Other Ways

Not everyone can socialize in the same way. And that’s fine. There are many ways to spend time with people. That could include:

Prepare meals together. Inform your spouse, partner, or other family members about your dietary needs. Even better, have them eat with you. “If you follow a specific nutrition plan, it will help if everyone is on the same page and you don’t have to do your own thing,” Duggan says.

Exercise with other people. It may be easier to stay active when you have someone to do it with. That’s a good thing because physical movement is a key part of treating kidney disease. Another big benefit: Studies show that both your mind and mood improve when you exercise socially.

Volunteer. People who do things for others tend to have better physical and mental health. Research has also found that volunteering can relieve depression, increase self-esteem, and give you a better outlook on life. It seems like you get the most benefit after volunteering for a long time.

Tell others about your IgA nephropathy treatment plan

It’s natural to want to take care of yourself. You may even want to isolate your loved ones from your illness. But IgA nephropathy is a long-term condition. And it’s important to be willing to ask for help along the way.

Chances are, your friends and family are ready and willing to pitch in.

“When people really love each other, one of the things that makes them most happy is being able to support someone they care about in their time of need,” Duggan says. “There is no need to take that responsibility away from anyone.”

Your emotional health improves and your chances of suffering from depression and anxiety decrease when you have caring people in your life. But social support is good in practice. For example, you may need help with your medications, being put on dialysis, or remembering all the complex information your doctor gives you.

Later, caregivers and social support may be even more critical. “Because it’s a vital part of the transplant process,” Rubman says.

Take care of your mental health

Tell your doctor if you feel overwhelmed or find it difficult to be around other people. They may refer you to a mental health professional who works with people with lifelong illnesses.

A therapist can help you learn to control your fears and worries about being sick. They will also help you take a closer look at how your illness affects the important things in your life.

“And for a lot of people, those are their relationships,” Duggan says. “It’s your family, friends, coworkers, that ability to engage in the world and have those meaningful interactions.”