Why community matters for kidney disease and mental health

Kidney disease and mental health struggles were not on Lupita Ayala's radar a decade ago. In fact, the reason she reached out to her doctor one day in 2018 was for a different health concern: urinary tract infections (UTIs). "I really didn't have any symptoms [of kidney disease]," Lupita said. "I kept getting recurring UTIs, which led the doctors to do a little more digging." It was during this "digging" that doctors discovered reduced kidney function and diagnosed Lupita with chronic kidney disease (CKD) stage 3b. 

At first, Lupita, an AKF Ambassador and Kidney Health Coach®, wasn't particularly concerned. At the time, she was only 25 years old and had little to no knowledge of kidney disease. "I didn't know much about [kidney disease]," she said. "No one in my family has ever had any type of kidney disease or kidney issues or had to be on dialysis. I kind of just brushed it off and said 'Okay, it's something I'm going to take medicine for and it's going to go away.'" 

But it didn't go away. Although Lupita was able to avoid being on dialysis for the first two years following her diagnosis; in 2021, she had to begin in-center dialysis. When she first started, she didn't have any coping mechanisms to deal with the stress of the situation. "I kept telling myself, 'You can do it,'" Lupita said. "[However], it just got to the point where I couldn't."

Struggling with anxiety and depression, Lupita said she didn't know how to handle what she was feeling. "I didn't have an outlet [to deal with it]," she said. "I didn't have anybody to talk to, and I didn't know how to get those emotions out. I didn't want to be a burden on my family."  

This fear of being a burden was reinforced by a negative cultural approach to mental healthcare that she had grown up with. "I'm from Mexico," Lupita said. "Most of the time, in my community and in my family, it was like, 'Everything happens for a reason, and you just take it and go with it and don't think about it. If it makes you sad, just move on.' That's why, when my health journey began, and I started to feel all these things, that's one of the reasons why I couldn't talk to anyone — I thought they were going to judge me and be mean to me about it."

However, Lupita reached a point where she could no longer avoid seeking help, as she was engaging in binge eating, experiencing anxiety attacks and telling her husband that she wanted to give up and stop treatment altogether. 

"That would mean that I would leave him here alone," Lupita said. 

After that revelation, she said her husband was a big advocate for her seeking therapy. It was this support that gave Lupita the push she needed to get help.  "When I finally went to therapy, he was very happy for me," she said. "Through the whole process, he's been very encouraging and supportive." 

To her surprise, Lupita's family was also supportive. "[My mom] was pretty understanding, but I think it's because she had seen everything that I had gone through and how I was reacting to it," she said. 

Lupita said therapy has been very helpful for her, along with medicine and engaging in activities she enjoys, such as hiking and being outdoors. "Being outside in nature helps me a lot," she said. "I don't know if it's because of the quietness or the breeze, but it's just so calming and it helps me relax my mind and de-stress for a little bit. Anytime I feel anxiety or depression coming on, I'm like 'Okay, time to go for a walk.'"

When asked what she would tell people who, like her, struggle emotionally with the weight of having kidney disease but are afraid to ask for help because they fear judgment, Lupita cited advice that her husband gave her and that she says stuck with her.

"[He said] 'It doesn't matter what you do, someone will always judge you, so do what makes you happy and feel okay," she said. "I say that to myself every day because it's true. You're not going to make everybody in life happy, so just concentrate on making yourself happy and [ensuring] that you have what you want and need to be okay." 

Lupita also emphasized that people struggling with kidney disease and mental health issues are not alone. "There are so many of us out there that go through the same thing," she said. "I feel like social media is such a big platform and there are so many people on social media who are open [about their struggles]. Find that community online or in person that is going through the same thing as you and lean on them."

For more information on how kidney disease can impact your mental health and how you can reach out for support, click here. 

Click here to watch the panel discussion Lupita took part in during our 'Dialysis at Home' event last year