Boston — A group of widows and caregivers for former NFL players, who have been diagnosed with chronic traumatic encephalopathy (CTE), has expressed strong criticism of a recent study that they find insulting and dismissing of their experiences with the disease. The open letter, which has gained traction, was signed by family members of many former athletes, including Hall of Famers.
The study, published in the May 6 issue of Frontiers in Psychology, suggests that the struggles caregivers face are more about “media hype” than the actual challenges of dealing with CTE. Caregivers argued that this implication is not only callous but also patronizing. In their letter, they emphasized that the hardship they go through is rooted in the reality of living with CTE, which has devastated the lives of their loved ones. “Our loved ones were giants in life, CTE robbed them of their futures, and robbed us of our futures with them,” they said.
Leading the response is Dr. Eleanor Perfetto, widow of former NFL player Ralph Wenzel, who suffered from severe dementia due to CTE. Perfetto pointed out that the study minimized the actual experiences of the caregivers, particularly as they were all women. “Why would a researcher jump to ‘the media’ when trying to draw conclusions out of their data?” she commented.
The study surveyed 172 caregivers of current and former NFL players, questioning their belief regarding the diagnosis of CTE in their partners. Perfetto challenged the notion that anxiety and concerns regarding CTE stemmed from media portrayals rather than lived experiences.
The caregivers acknowledged that while the study highlights critical issues affecting families, its conclusions about media influence were misguided. In their letter, they requested the researchers to clarify that their burdens are a direct result of the disease itself, not due to external influences.
The authors of the study, Rachel Grashow and Alicia Whittington, stated their goal was to help NFL families, acknowledging their research was never intended to downplay the severity of CTE. They expressed concern if their work had been misinterpreted in any way.
Perfetto and the other caregivers worry this kind of dismissal could contribute to ongoing challenges in addressing the implications of CTE and the real struggles families face after their loved ones’ diagnoses. As they rally together, they seek not only recognition for their experiences but increased awareness surrounding the real and profound effects of CTE on both players and their families.
