Mother and daughter RECOVER Representatives share their journey of recovery, caregiving, and advocacy

Joining RECOVER

Lydia and Hyatt became involved in RECOVER after Lydia reconnected with a high school friend, Mylynda B. Massart, MD, PhD, who leads the Community Engagement Alliance Consultative Resource (CEACR). CEACR collaborates with RECOVER to enhance the initiative’s efforts to meaningfully include and engage the Long COVID community with research studies, and Dr. Massart was able to connect Lydia with the opportunity to get involved in RECOVER. 

Lydia, who has a background in advocacy work, saw Dr. Massart’s work, including her efforts to build trust with the African American community, and was impressed. She then knew she could trust RECOVER and share it with her community. “It’s taken years to build the trust of my community,” Lydia said, “and I wasn’t just going to bring in anyone or any kind of information [about Long COVID] that wasn’t legitimate.”  

Hyatt, who earned her degree in biomedical science, decided to also get involved with RECOVER as a Caregiver Representative. “As a native woman in science, I’m passionate about providing proper information and awareness to my community,” she said. “RECOVER was a really good opportunity to participate in real-time science.”  

Both Lydia and Hyatt serve on RECOVER’s National Community Engagement Group (NCEG) Communications Subcommittee, where they ensure scientific findings and messages resonate with communities where many people have been impacted by COVID and Long COVID. Lydia has helped to inform RECOVER study materials by sharing what will be relevant to Native communities.  

Hyatt has also contributed to the process of writing RECOVER scientific manuscripts, relying on her lived experience as a caregiver and her educational background to provide perspective. “I’ve written my fair share of scientific literature [during my studies],” she said. “I love to be involved in that process, making sure that not only is science clear and direct, but also easy to understand.” 

Participating in RECOVER has also given Lydia language to describe her symptoms. While attending a RECOVER Research Review (R3) Seminar, she discovered she was experiencing post-exertional malaise (PEM). PEM is a debilitating condition where a person’s symptoms worsen after physical, mental, or emotional activity, sometimes lasting for days. “I didn’t have a name for it, but I just knew that I was so exhausted,” Lydia said, noting that she was sometimes sleeping for 17 hours at a time. “It feels validating when you finally have a term for it; now that we know what it is, how can we prevent flare-ups?” While explaining how she manages her flare-ups, Lydia said, “Sometimes I know what my limits are physically, but then sometimes I don’t.” 

Leaning on family for support 

To support her mother, Hyatt cares for her younger siblings, helps with housework, and cooks for the family. She explains that stepping into this role gives her mom the opportunity to focus on her health and prioritize managing her symptoms. “She’s a mom so she never puts herself first,” Hyatt said. “[For me] it was a matter of what I can I do to allow her to put herself first, because I know she has the strength to get herself healthy.” 

Hyatt said that although it was scary to see her mom unable to do the things she used to, she has continued to hold onto hope for Lydia’s health. By stepping into her caregiver role, Hyatt has provided Lydia with the time to connect online with others who have Long COVID and research how she can better manage her symptoms.

Lydia added that although she has flare-ups, she feels fortunate that she has been able to manage her symptoms and improve over time. She knows others with Long COVID who still face debilitating symptoms every day. She is thankful for Hyatt’s caregiving and support, which has helped her to improve slowly over time. 

“Hyatt’s caregiving means the world to me,” Lydia said. “I wasn’t able to do the normal things I typically do for the holidays when I first experienced my symptoms, so she really stepped up and ensured our family was still able to enjoy the holidays. Her caregiving also means that when I have a flare-up, I know that my son will still get to school, get to hockey, and will be fed.”

Lydia added that Hyatt’s background in science has been extremely helpful in her care. “Not only does she take care of me, but she ‘translates’ all the medical terms for me and explains everything in lay terms so I can fully understand what is happening,” she said. 

A legacy of advocacy work

The mother-daughter duo sees their work with RECOVER as an extension of advocacy work to which they’ve dedicated much of their lives. In 2018, they started a nonprofit called the Lydia Lerma Foundation to advocate for justice for missing and murdered individuals and to support survivors of abuse within indigenous communities. 

RECOVER provides an opportunity to raise awareness about Long COVID in communities like theirs that were greatly impacted by the COVID pandemic. “We’re a pretty diverse group of urban natives here [in Colorado],” Lydia said. “We have indigenous people from as far south as South America and try to share [information] with our local community.” Hyatt added that serving as RECOVER Representatives allows them to help ensure that native communities not only have awareness of Long COVID, but are also given the opportunity to participate in important science. 

Lydia is determined to continue using her voice to inform others about Long COVID and to advocate for their health. “I didn’t ask to be a Long COVID survivor,” Lydia said. “But this is where I’m at, and I will use the platform I have established to advocate for those of us who need it.” 

Learn more about National Native American Heritage Month, and understand the important role of caregivers by exploring resources for National Family Caregivers Month.