Living with chronic kidney disease (CKD) can be challenging and may feel isolating at times. Connecting with other people who face similar challenges may help you feel less alone, while giving you a chance to share your experiences and learn from others.
CKD affects an estimated
Healthline spoke with Dale Rogers to learn about the benefits of community support and how to connect with others with CKD.
Dale is a patient advocate and board member of the American Association of Kidney Patients (AAKP). He draws on his personal experiences to support fellow community members, raise awareness, and advocate for legislative changes to improve kidney care through the AAKP’s National Ambassador Initiative.
Here’s what he had to say.
This interview has been edited for brevity, length, and clarity.
One of the main ways I’ve connected with others is by going back to dialysis units, where I personally sat in the chair, to support people who are still on in-center hemodialysis.
I’d go around for about 2 hours a week, and when people hear that you sat in the chair they’re in now, they turn off the TV, put their book down, and jump into the conversation.
None of us want to be different, and when you see that you’re not the only person experiencing something and there’s somebody who’s been doing it longer than you have, you want to know how they’ve jumped the hurdles.
I’ve gone through some difficult times and some serious challenges, and I’ve made it through.
I don’t want others to have the same challenges I had.
I’m not saying that I’ve been through everything or the same things that other people are challenged with, but I can tell people about things I’ve had problems with and how I’ve been able to make it through. That can give them hope and an idea of where to get started.
When we connect with other people with kidney disease, I think it improves our mental health and our ability to improve our own care.
There are mental health challenges with any chronic illness, and I think that connecting with others in person or through online support groups can help because they’re dealing with this as well — and they may notice things that you’re not picking up on and say, “Hey, are you looking at this, Dale?”
When you communicate with other people with kidney disease, it also helps you learn how to communicate with your family and your doctor. The more information you can pick up, the more you can take back to your doctor and say, “Hey, would this work in my care? Or, how can we apply this to my care?” That’s the key to success.
We only get a few minutes with our doctors every few months, so we’ve got to learn to ask the right questions when we’re there.
I always tell people to get involved with one of the national kidney organizations.
There are different organizations out there. I chose AAKP because it fits closest to my values. If there’s an organization that’s not connecting with your values, or they’re using your sickness for financial gain, that becomes a problem. You’ve got to connect with a group that fits your values, and that’s doing something to help people.
One of the things that I think is beneficial is AAKP’s HealthLine and HealthLine Innovators Webinars. The webinars often have a person with the condition speaking on a certain issue and also medical professionals speaking on it. The Innovators webinars are focused on new treatments and the latest research developments.
AAKP also hosts a National Patient Meeting each year, with lots of helpful ideas for people living with kidney disease. It’s a great way to connect with others.
You can also go to AAKP’s website to find a list of independent support groups across the United States.
Social media is also beneficial, but I would caution people to be careful because there are a lot of people out there on the internet who are trying to benefit in their own ways.
After my kidney transplant, my transplant nephrologist got me involved nationally. That’s when I connected with AAKP and got more involved in policy and in connecting with legislative and congressional representatives on issues in the kidney community.
I think once we teach someone to advocate for their own care, it’s natural to say, “Wait! I can help others with this!” When people learn to advocate for themselves, it opens the door to getting involved with a program, such as the AAKP’s Ambassador Initiative, that helps them extend their advocacy to others and even further to Capitol Hill.
We each have our own abilities we can use to help out and share with others.
Dale Rogers is a patient advocate and board member of the American Association of Kidney Patients who lives with type 1 diabetes, high blood pressure, and chronic kidney disease. He’s received life-sustaining treatment with medication, dialysis, and multiple organ transplants. He’s committed to helping others avoid and manage some of the health-related challenges that he’s survived.