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The dangers of forgetting the “Heart Worrier” inside your “Heart Warrior”

Updated: May 31

The dangers of forgetting the “Heart Worrier” inside your “Heart Warrior”: Understanding the impact of medical trauma and language on identity


THE INNER, EMOTIONAL WORLD OF THE CHILD WITH CHD

AUSTIN E. WILMOT, M.S.W., L.C.S.W.


“Heart warrior” or “heart worrier”

A Freudian slip, also called a “parapraxis”, is a slip of the tongue that seems to inadvertently reveal unconscious thought or attitude that the speaker may not have intended to reveal. Errors in writing, speech, memory and physical action are not always “errors” after all, but the tip of an iceberg often representing a deeper, underlying psychological meaning unseen in the depths below. Misreadings, mishearings, mistypings, temporary forgettings and the misplacing and losing of objects are examples of ways that our unconscious mind might find a way of expressing itself. As I was preparing to write this article on medical trauma, I stumbled across an email from someone who had written “heart worrier” in place of “heart warrior”. This person was an adult referring to a child. Why might this have happened, I wondered. Perhaps we say this was an “accident” with no other significance—“sometimes a cigar is just a cigar.” However, given the context, I think there is more to the story than just two mistyped keys.

To our ears, there is virtually no distinction between “warrior” and “worrier”, yet each carry very different meanings. It is through the written word that this slip became apparent. Consider for a moment how often one hears “heart warrior” spoken among family and friends or is seen online and in social media. It has become a common way of referring to someone living with CHD. There are also shirts and merchandise sold with various incorporations of the phrase. Heart Warrior certainly sells and has found a place in the CHD community lexicon. But why? Where does this phrase come from? What is meant by “heart warrior”? Is there something deeper to understand about its invocation or that of its apparent twin, “heart worrier”?

The intersection of trauma and identity

Humans are word-users and meaning-makers, using words as vehicles of meaning. Words are powerful because of meaning. How we understand ourselves and others—how we think of identity—is shaped by how we use language to convey the meaning of our experiences, including traumatic ones. To what extent do we identify with the events of our life, thus shaping identity, especially traumatic, difficult or painful ones? Does doing so enhance and expand a sense of wellbeing, or constrict oneself to a narrower understanding of oneself and one’s future? The relationship between trauma and identity is complicated (Berman, 2016):

Trauma can disrupt identity development

-A child growing up with CHD, confronted by difficult feelings and challenges

Identity can alter our view of trauma

-A person with negative views of oneself may perceive and interpret CHD in a way that leads to a core sense of oneself as a victim (posttraumatic distress)

Identity can help or hinder recovery from trauma

-A person, aided with positive views of oneself, may more easily come to terms with CHD in proactive ways (posttraumatic growth)

Trauma can be incorporated into identity

-A person’s CHD may become life-defining to an inhibiting and overwhelming degree or it may become integrated as one aspect of their overall identity

To help us think about the languaging of experience, what differences exist for someone identifying or spoken about in the following ways?

· divorced or widowed vs. single

· a survivor of breast cancer vs. a former oncology patient

· a survivor of sexual assault vs. someone who has experienced sexual assault

· a survivor of CHD vs. someone living with CHD

Susan went through a divorce months ago and checked the box at her doctor’s office for “divorced” yesterday. All things being equal, will Susan check that box again in one year, five years or ten years? When might Susan feel like identifying herself differently?

John’s wife died two years ago and he checked the box on a survey for “widower” yesterday. All things being equal, will John check that box again in one year, five years or ten years? When might John identify himself differently—what kind of internal change would precipitate that?

In the case of someone identifying as a survivor (or victim) of an experience, whether historical, ongoing or both, what internal changes would lead that person speaking of their experience in different terms? Answers to these questions involve how a person makes meaning of the experiences one is dealt:

“How can meaning make a difference? It doesn’t seem to be the kind of physical property, like temperature or mass or chemical composition, that could cause anything to happen. What brains are for is extracting meaning from the flux of energy impinging on their sense organs…. The job of a brain is to “produce future” in the form of anticipations about the things in the world that matter….” (Dennett, p. 178).

What kind of future is produced for someone when their experience is consolidated into an unchangeable label? How might “future” be conceived differently in someone who continues to define and confine their identity in one way? While there is nothing “incorrect” about any of the ways of identifying above, the difference between the left-hand and right-hand examples shows the subtle difference in how trauma might be integrated into identity differently over time.

The birth of “heart warrior”

Based on a search of Amazon, “the heart of a warrior” and “the warrior’s heart” appear as much more common combinations of “heart” and “warrior”, preceding the appearance of “heart warrior”. A broad Google search of verbatim references to “heart warrior” did not reveal any significant use of the term in material prior to 2005. As another metric, and although not active, the website heartwarrior.com was registered in February 2002. The first Twitter post to invoke “heart warrior” was in March 2008. The first Facebook post to reference “heart warrior” appeared in September 2010. The first book to publish a title with “heart warrior” was in April 2012 with Heart Warriors: A Family Faces Congenital Heart Disease, by Amanda Rose Adams. All of this is to say that “heart warrior” is a term that has increased in the frequency of use since the early 2000s. Whether this is related to increased survival rates and medical advances contributing to more living persons with CHD is one possibility. But, besides the question of frequency, why do we have “heart warrior”? The answer comes through an exploration of purpose.

Daniel Dennett, in his book, Intuition Pumps and Other Tools for Thinking, states that “meaning is always relative to a context of function” (p. 197). What this means is that, although we may not ever know its original intentionality, the meaning of “heart warrior” must relate to a function for which it serves. What we know is that parents typically call their child (or adult) living with CHD a “heart warrior”, associating the phrase with certain qualities:

I call her (and have taught her to call herself) a heart warrior because she is strong, has been fearless and is courageous to continue the fight. She’s like a warrior in battle. She’s my little heart warrior.”

We also know that many people of all ages have adopted the term (perhaps from family usage) as a way to identify, referring to themselves as a “heart warrior”. While those in the CHD community might think “that person has CHD” in response, the general population have its own ideas. Use of the term requires insider knowledge compared to saying my child (or I) was born with congenital heart disease. As a point of departure, “heart warrior” is farther away from the facts at hand of congenital heart disease, and generates its own set of assumptions (e.g., all “heart warriors” are…). It might feel good, empowering even, to think of your child (or one’s self) as a “heart warrior”, but what are we not saying—what are we not talking about—in doing so? Why does it take a new label, which generates new stigma, to achieve such empowerment? Might this have something to do with the flip side of a “heart warrior”—a “heart worrier”?

The natural other half of a “heart warrior” is a “heart worrier”

“Heart warrior” and “heart worrier” are two sides of the same coin. Below, I highlight the opposing associations to “heart warrior” and “heart worrier”.



The adage, “the whole is more than the sum of its parts”, is certainly true here. Bravery cannot exist without fear. Real strength cannot exist without acceptance of vulnerabilities, limitations and feelings. It is through thinking more broadly about what is meant by this warrior-worrier dialectic that we discover what each aspect brings to the other—that each side needs the other. Both children and adults are led to cultivate strength when they are allowed to express their full range of feelings, including (but not limited to) their feeling scared, vulnerable, defective, angry and sad. Strength also arises out of an understanding of one’s condition, as developmentally appropriate—understanding that can fill in the gaps of knowledge and correct distortions in thinking that were based in fantasy about one’s condition.

We need to wonder: Are we out of balance—asking children with CHD to be more “warrior” before we’ve more fully helped them with their worries? Are parents out of balance themselves, magnetized to a label that inadvertently denies their child’s inner, emotional world? If so, is this because the parent is having their own difficulty with their worries, thus needing to think about their child in a narrower fashion (while transmitting this to the child) to protect against uncomfortable conversations that the parent may not feel capable or ready to handle?

The dangers of forgetting the “heart worrier” inside your “heart warrior”

Published findings from research studies continue to tell us the same thing over and over again, seemingly reminding us about the emotional dimensions of either living with CHD or parenting a child living with CHD. Research continues to find significantly higher levels of anxiety, depression and posttraumatic stress in children and adults living with CHD. You may refer to the bibliography for a sampling of articles. Pubmed.gov may be searched for such information, as well.

Too many children are stuck in a “heart worrier” state. Too many children are instructed to be “heart warriors” before they have been helped to address their heart worries and think about their congenital heart disease and identity. These children grow up (and, often, into adults) with unresolved feelings about their CHD, bodies and sense of self. Posts on social media, such as the below, demonstrate such concerns:

“I’m posting this here because I feel like this is the only group that will truly understand, not trying to scare anyone.. but I am truly petrified of my heart defect (diagnosed at 1, repaired at 3), now 32 years of age. I get so frightened…. It has been consuming my thoughts so much lately. Please understand, I’m not trying to be negative in any way, I am just looking for consolation from others who have been there because I’m terrified.”

In this post, we have an adult seeking support on a social media platform, sharing their tremendous fear and anxiety about their CHD. It is curious that the adult writes “I’m not trying to be negative in any way”. This seemed to be written out of additional worry that it was not okay to share very real feelings and worries. Why is it that both children and adults living with CHD are having additional difficulties—feelings of shame, embarrassment or anxiety—naming and talking about these very real feelings as a “heart worrier”, even in their own families or groups of peers living with CHD? This is cause for alarm.

Another post is from a parent:

“We have surgery on March 4th in Edmonton for my son- 6 hours away. I'm sad and scared. Is he at risk during this month? Of what? I'm just terrified he won't come back to me. And no one really likes talking about this and it makes me feel lonely. I just need this surgery to go well and fix my boy. Please pray for us - this month seriously sucks.”

In stating, “no one really likes talking about this and it makes me feel lonely”, this parent echoes the real problem in families and communities in not making space for all the feelings of a “heart worrier”—even a “heart worrier” parent. Talking about “heart worries” is a much more helpful endeavor, for children with CHD and their families, than silence or “warrior-izing” a child with real worries on their mind.

The integration of one’s trauma into identity

Attention on the “heart worrier” inside the “heart warrior” is paramount to the well-adjusted development of a healthy sense of identity for a person with CHD. This care and attention on the inner, emotional world of a person with CHD cultivates a fuller understanding of oneself, neutralizing warring and worrying aspects of the self that help create a person freer emotionally. This validation of both aspects works to expand one’s freedom to make choices about one’s identity and life. It is through helping children to express and think about their own emotions, finding words to verbalize their own feelings that we nurture this process along.

Bibliography

Berman SL (2016) Identity and Trauma. J Trauma Stress Disor Treat 5:2. doi:10.4172/2324-8947.1000e108

Dennett, D. C. Intuition Pumps and Other Tools for Thinking. W.W. Norton & Company, 2014.

Research articles related to mental health in children/adults living with CHD & parents of children with CHD

Andonian, Caroline et al. “Current research status on the psychological situation of adults with congenital heart disease.” Cardiovascular diagnosis and therapy vol. 8,6 (2018): 799-804. doi:10.21037/cdt.2018.12.06

Oliver, Amanda M et al. “Health anxiety and associated constructs in children and adolescents with congenital heart disease: A CHAMPS cohort study.” Journal of health psychology, 1359105318755263. 1 Feb. 2018, doi:10.1177/1359105318755263

Kolaitis, Gerasimos A et al. “Mental Health Problems in Parents of Children with Congenital Heart Disease.” Frontiers in pediatrics vol. 5 102. 8 May. 2017, doi:10.3389/fped.2017.00102

Leslie, Carine E et al. “Perceived health competence predicts anxiety and depressive symptoms after a three-year follow-up among adolescents and adults with congenital heart disease.” European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology, 1474515119885858. 13 Nov. 2019, doi:10.1177/1474515119885858

© 2020 Congenital Heart Defects Families Association. All rights reserved

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