Ask the Health Leaders: How Does CKD Impact Relationships?

In case you missed it, check out Part 1 of this series!

Living with a chronic health condition like chronic kidney disease (CKD) can be a challenge. CKD can impact your relationships with family, friends, coworkers, and others. The different ways CKD can impact your finances, work, social outings, and other aspects of daily life can put a strain on relationships with others – especially if they don't understand CKD's impact. But it may also bring you closer to the most important people in your life.

Each person impacted by CKD has unique experiences. That is why we asked our Chronic-Kidney-Disease.net Health Leader team to share their unique experiences managing relationships with CKD and advice on how others can support their loved ones living with CKD in this installment of our Ask the Health Leaders article series. As we highlight the diverse experiences of people living with CKD for National Kidney Month this March, read on to see what they had to say…

The strain of CKD on friends and family

Jokiva Bellard: "CKD has definitely placed a strain on friendships and relationships with family. Because of my health condition, I cannot go anywhere and do anything. Sometimes when I am sick, my friends do not understand that. I have lost relationships with people who did not understand my condition. Please do not compare your family's level of sickness to anyone else’s, because everyone who deals with the same condition is not the same."

Setting reasonable expectations

Gabrielle Davis: "Facing lupus and CKD introduced me to a new reality, especially regarding my fear of relying too much on others – even close friends and family. It became a journey to discover who was genuinely willing to lend a hand and understand the impact of CKD on my life. Some had the capacity and interest, while others didn't. Looking back, I'm grateful I've learned how to place people in my life and set reasonable expectations."

Living well with CKD is not a solo journey

"If I could share one piece of advice, it's learning to be okay with asking for help, because you'll need it. Living well with CKD isn't a solo journey. Additionally, it's crucial to accept that not everyone in your life may have the capacity to support you in the way you hope for. Embracing this reality can help you navigate the challenges of CKD with a more open and understanding perspective."

Helping loved ones who also live with CKD

Diane Talbert: "So many of us in my family now have CKD that we just try and support each other. With my son, I try to make healthy meals without salt. For my father, I am more than a caregiver. I am his friend, and he can say whatever he wants to me. I don't judge.

"I did tell a friend that I have CKD, and she burst out crying. I tried to explain to her that if I take better care of myself, I could be here for many years to come. I'm no different than anyone else who has a chronic illness. Several times I've mentioned a relative who has been on dialysis for over 25 years. During every conversation I have with her, I ask if she needs a ride to dialysis because she doesn't drive.

"Just helping someone with tasks like cleaning or cooking is a big help. I know for me, don't try and be my savior. There are times when I just need a listening ear, not your opinion."

Taking the time to understand

Sabad Khaire: "I've lost and gained new friends, and lost family members and even partners, but it's been a learning curve. Don't be too hard on yourself if you want to be selfless and put yourself first – I struggled a lot with letting people go. I realized that when people couldn't understand why I couldn't go to events or nights out with friends, I reached a point where I was tired of explaining myself. I even had someone tell me, 'Can't you just miss treatment (dialysis)?'

"I knew how important it was to keep a relationship with people who first took the time to listen, understand my conditions, and, most importantly, call to ask me how I am. My advice for people who are a support system for someone with CKD is to say, 'How are you TODAY?’ Every day is different – we wake up either full of energy or want to cuddle up in our duvet covers watching TV all day. Sometimes we want you to listen and not give advice because, trust me, we hear it all the time. Just be there when they do ask for it."

Providing support while maintaining independence

Holly Wakelin: "Growing up with CKD has positively and negatively impacted some relationships. Especially when I was younger – it was never something I liked to talk about, and in turn, I would push away those closest to me who were trying to help. As I've gotten older and am heading toward a transplant, it has made many of my relationships with friends and family a lot stronger. I have family from overseas reaching out to me to ensure I am okay. I have my mum and partner, who come to appointments with me or are just there for a shoulder to cry on.

"If I were to share a piece of advice on how you can support someone living with CKD, it would be – especially in the end stages – to let them still have their independence. This can be hard since we often need more help in the end stages. But I mean to let them still make decisions for themselves. Sometimes it can be really hurtful knowing that you can't do what others can do. Therefore, having those moments to make your own decisions and be independent can be liberating."

The importance of listening

Danyea Bailey: "CKD has definitely affected my relationships with family and friends. I believe that you will encounter most of your misconceptions among family. Family usually has an unobtainable filter, so their thoughts and words will impact you more often than what your friends may think or be able to communicate with you. Being diagnosed at an early age was definitely hard on my immediate acquaintances. I had friends who took the time to understand and support me, and those who could not understand. There were many people I had to leave behind because they weren't conducive to the environment that kept me safe during my journey.

"One piece of advice I could share to those supporting their loved one with CKD is to be a good listener. Ask questions and educate yourself as much as possible. I will never forget the words my now husband said to me when we were dating. He said, "I don't know much about what you're going through, but I did research some things. I would love to talk to you more about your journey so I can better support you."

Check back for Part 3 of this series!