November is Caregiver Awareness Month and, in this episode, Yulanda Brown and Steve Mayo talk candidly about their IgAN journey and how staying centered on what brought them together has helped them grow closer despite their struggles.
Yulanda’s diagnosis came as a shock for both. The uncertainty and lack of information about the disease left them grappling with fear and confusion.
There is a very definite learning curve that comes with becoming a caregiver/care partner, Steve shares – it’s about leaning in, learning about the disease, asking for and accepting help, and realizing it’s OK not to have all the answers. Consistently showing up and being there through the ups and downs is what matters most. But to do so, you have to take care of yourself so you can be present for and stay in sync with your loved one.
The two speak openly about the unexpected emotional and physical strain on both patient and care partner and how the dynamics of their relationship have shifted with the diagnosis. Steve emphasizes the importance of communication, patience, and understanding in his role as a care partner, while also acknowledging the personal struggle that often accompanies it.
This episode is a must-listen for anyone affected by IgAN, especially caregivers and care partners. Yulanda and Steve offer wisdom to others facing IgAN, reinforcing the importance of staying connected, communicating openly and grounding themselves in love. Their story is a reminder that while the journey may be long and challenging, it is also filled with moments of deep connection, love and hope. Their commitment to each other and to the IgAN community offers inspiration and comfort to those facing similar struggles.
Yulanda and Steve have been together for over 38 years and celebrated their 36th wedding anniversary on November 5, 2024. Together, they have four children and seven grandchildren. Both are retired, Yulanda from Civil Service and Steve from Law Enforcement. They enjoy spending quality time with family and friends capturing moments that last a lifetime.
Both Yulanda and Steve talk about how the IgA Nephropathy Foundation has supported them in their journey, helping them connect with others going through similar experiences – offering empathy, understanding and a sense of belonging.
Episode 18: Tips for Dealing with the Emotional Side of Living with IgAN