Stories of the Heart: Illness Narratives of Veterans Living With Heart Failure

Veteran Status

Being a veteran in the Veterans Health Administration (VHA) system impacted how a narrative understanding of illness was created. Veterans are a unique cultural population with aspects of their illness experience that are important to understand.¹⁰ Institutions such as the VA also enable and constrain components of narrative creation.²⁰ The illness narratives in this study were cocreated within the institutional setting of the VA. Part of the analysis included exploring how the institutional setting impacted the narrative creation. Emergent subthemes of the uniqueness of the veteran experience include financial benefits, intersectionality of government and health care, intersectionality of masculinity and military service, and the dichotomy of military experience.

In the US it is unique to the VA that the government both treats and assesses the severity of medical conditions to determine eligibility for health care and financial benefits. The VA’s financial benefits are intended to help compensate veterans who are experiencing illness as a result of their military experience.²¹ However, because the VA administers them the Veterans Benefits Administration and the VHA, veterans see both as interconnected. The perceived tie between illness severity and financial compensation could influence or bias how veterans understand their illness severity and experience. This may inadvertently encourage veterans to see their illness as being tied to their military service. This shaping of narratives should be considered as a contextual component as veterans obtain financial compensation and health insurance from the same larger organization that provides their health care and management.

George was a young man who during his service had chest pains and felt tired during physical training. He was surprised when his cardiologist explained his heart was enlarged. “All I know is when I initially joined the military, I was perfectly fine, you know, and when I was in the military, graduating, all that stuff, there was a glitch on the [electrocardiogram] they gave me after one day of doing [physical training] and then they’re like, oh, that’s fine. Come to find out it was mitral valve prolapse. And the doctors didn’t catch it then.” George feels the stress of the military caused his heart problems: “It wasn’t there before… so I’d have to say the strain from the military had to have caused it.” George’s medical history noted that he has a genetic connective tissue disorder that can lead to HF and likely was underlying cause of his illness. This example of how George pruned his narrative experience to highlight the cause as his military experience instead of a genetic disorder could have multiple financial and health benefits. The financial incentive for George to see his illness as caused by his military service could potentially bias his illness narrative to find his illness cause as tied to his service.

Government/Health Care Intersectionality

Veterans who may have experienced trust-breaking events with the government, like Agent Orange exposure or intergenerational racial trauma, may apply that experience to all government agencies. Bob felt the government had purposefully used him to create a military weapon. The army “knew I was angry and they used that for their advantage,” he said. Bob learned that he was exposed to Agent Orange in Vietnam, which is presumed to be associated with HF. Bob felt betrayed that the VHA had not figured out his health problems earlier. “I didn’t know anything about it until 6 months ago… Our government knew about it when they used it, and they didn’t care. They just wanted to win the war, and a whole lot of GIs like me suffered because of that, and I was like my government killed me? And I was fighting for them?”

Henry learned to distrust the government and the health care system because of a long history of systematic oppression and exploitation. These institutions’ erosion of trust has impact beyond the trust-breaking event itself but reverberates into how communities view organizations and institutions for generations. For Black Americans, who have historically been experimented on without consent by the US government and health care systems, this can make it especially hard to trust and build working relationships with those institutions. Health care professionals (HCPs) need to build collaborative partnerships with patients to provide effective care while understanding why some patients may have difficulty trusting health care systems, especially government-led systems.

The nature of HF as an illness can also make it difficult to predict and manage.²² This uncertainty and difficulty in managing HF can make it especially hard for people to establish trust with their HCPs whom they want to see as experts in their illness. HCPs in these narratives were often portrayed as incompetent or neglectful. The unpredictable nature of the illness itself was not reflected in the narrator’s experience.

Masculinity/Military Service Intersectionality

For the veteran narrators, tied into the identity of being a provider are social messages about masculinity. There is a unique intersectionality of being a man, the military culture, and living with chronic illnesses. Dominant social messages around being a man include being tough, not expressing emotion, self-reliance, and having power. This overlaps with social messages on military culture, including self-reliance, toughness, persistence in the face of adversity, limited expression of emotions, and the recognition of power and respect.²³

People who internalize these social messages on masculinity may be less likely to access mental health treatment.²³ This stigmatizing barrier to mental health treatment could impact how positive narratives are constructed around the experience of chronic illness for narrators who identify as masculine. Military and masculine identity could exclude or constrain stories about a veteran who did not “solider on” or who had to rely on others in a team to get things done. This shift can especially impact veterans experiencing chronic illnesses like HF, which often impact their physical abilities. Veterans may feel pressured to think of and portray themselves as being strong by limiting their expression of pain and other symptoms to remain in alignment with the dominant narrative. By not being open about the full experience of their illness both positive and negative, veterans may have unaddressed aspects of their illness experience or HCPs may not be able have all the information they need before the concern becomes a more serious health problem.