IgA nephropathy is difficult to predict. But there’s one thing experts know. People with strong emotional and social support systems tend to do better in the long run. And it’s best to live your life to the fullest, no matter how kidney disease affects you.
“Whether it’s skiing or knitting or going to soccer games as a group, it’s important to continue as much of your normal life as possible,” says Susan Rubman, PhD, a medical psychologist at Yale Medicine. “That makes us feel like we are whole people, instead of a person with a disease.”
Keep your doctor informed about daily challenges. Let them know if you feel like depression or anxiety is closing you off 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 as you get older, living with chronic kidney disease can set you apart from your friends and family.
“It can be isolating when you experience symptoms or limitations that people just don’t understand,” says Rubman.
For example, you may be on a low-sodium diet, need to limit your fluid intake, or require long-term dialysis. You may be concerned that you may one day need a kidney transplant, or you may have already had one.
You may feel more comfortable talking to people who are experiencing similar health problems. This is called peer support, and studies show that people with all kinds of health problems can benefit from it.
There is more than one way to find people who have the same or a similar condition. 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.” These are other people with firsthand knowledge of living with chronic kidney disease, including people on dialysis or who have had a transplant.
“People who have been through this experience have tremendous credibility,” Rubman says. “Sometimes even more 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 near you. They can give you tips on what life is like with chronic kidney disease and what resources are available in your community. “That’s a wealth of knowledge that even your doctors or nurses may not have,” she says.
To find these people, search online for “kidney support groups near me.” You may be surprised at the choices that appear. You can also search for in-person or virtual support groups in the following ways:
- IgA Nephropathy Foundation
- National Kidney Foundation
- American Association of Kidney Patients
- Facebook groups or other social media sites
The National Kidney Foundation offers a mentorship program called NKF Peers. You can chat by phone with someone who has kidney disease or become a mentor yourself. Visit the National Kidney Foundation website for more information.
Stay involved in other ways
Not everyone can socialize in the same way. And that’s okay. There are many ways to spend time with people. That could include:
Making meals together. Let your spouse, partner or other family members know about your nutritional needs. Even better: let them eat with you. “If you’re following a specific nutrition plan, it’s helpful if everyone is on board and you don’t have to do your own thing,” says Duggan.
Practice with other people. It may be easier to stay active if you have someone to do it with. That’s a good thing, because physical exercise is an important part of the treatment of kidney disease. Another big advantage: research shows that both your mind and your mood get a boost when you train socially.
Volunteer. People who do things for others tend to have better physical and mental health. Research has also shown that volunteering can relieve depression, boost your self-esteem and give you a better outlook on life. It seems like you get the most benefit from volunteering for a long time.
Let others know about your treatment plan for IgA nephropathy
It’s normal to want to take care of yourself. You may even want to isolate your loved ones from your illness. But IgA nephropathy is a condition that you will suffer from for a long time. And it’s important that you are willing to ask for help along the way.
Chances are your friends and family will be willing to help.
“When people truly love each other, one of the greatest things they get happiness from is being able to support someone they care about in their time of need,” Duggan says. “You don’t have to take that responsibility away from anyone.”
Your emotional health improves and your risk of depression and anxiety decreases when you have caring people in your life. But social support is good in a practical sense. For example, you may need help taking your medications, getting a ride to dialysis, or remembering all the complex information your doctor tells you.
Later, caregivers and social support may be even more important. “Because that’s an essential part of the transplant process,” says Rubman.
Take care of your mental health
Tell your doctor if you feel overwhelmed or find it difficult to be around others. They can refer you to a mental health professional who works with people with lifelong illnesses.
A therapist can help you manage your fears and concerns about being sick. They will also help you see more clearly how your disease affects the important things in your life.
“And for a lot of people, that’s their relationship,” Duggan says. “It’s their family, friends, co-workers, that ability to participate in the world and have those meaningful interactions.”