Stories and Stigma: Why So Many Mental Illnesses Remain Hidden

By Nathan Ahlgrim

Patient T was in the throes of an eating disorder. The eating disorder prevented Patient T from attending a friend’s wedding because the food being served did not fit within the strict, self-imposed diet. The disorder led this patient to maintain a heavy exercise regimen even with a sprained wrist, since the pain was preferable to the anxiety of missing a workout. After a while, diet and exercise were not enough, and drugs were introduced to manipulate their physical appearance. Obsessive thoughts and behaviors surrounding food and exercise came to consume the patient’s life.

Video courtesy of Tedx Talks.

The patient’s name is Tim. He put himself on a regimen of anabolic steroids and constructed his life around building more and more muscle. He, like many men with an eating disorder or body dysmorphia, did not acknowledge his mental illness, because he (like many) thought that those kinds of disorders were “women’s illnesses.” The narratives surrounding mental illnesses can control help-seeking more strongly than the best scientific recommendations. Because society’s story of eating disorders is not typically presented as a male story, many men like Tim do not even recognize their symptoms as problematic until they are severely impacting their lives (Räisänen & Hunt, 2014). The stigma built on the limited narratives surrounding mental illnesses can then dictate health and help seeking outcomes.

Promoting Silence

Image courtesy of Public Domain Pictures.

The narratives of mental illness control the behavior of all stakeholders in this story, from patients like Tim all the way through the physicians with the authority to diagnose them. By some estimates, 25% of all people with an eating disorder are male, but they only account for 10% of the diagnosed population (Lemberg, Stanford, & Turberville, 2012). Men are seeking treatment and identifying their eating disorders in much smaller numbers than their female counterparts, which is driven both by their own behavior and how they are assessed by their physicians.

Stigma arises from fear, stereotypes, and a lack of information about mental health (Corrigan & Watson, 2002). It’s not just about how people with mental illnesses are treated by others, it’s about how they internalize their illnesses into their identity. Gender roles, religiosity, and historical relationships with medical authorities all factor into how a person navigates and identifies with their own mental illness (Mascayano et al., 2016; Sapag et al., 2018). People with mental illnesses integrate the illness into their identity, but they can also internalize and identify with societal stigma. Internalizing the stereotypes associated with a mental illness is known as self-stigma (Corrigan & Watson, 2002; Corrigan, Watson, & Barr, 2006). Self-stigma can push people to secrecy. It ruins lives, and it does so in synergy with demographics and individual identity (Ilic et al., 2012).

Even when they do seek treatment, physicians’ biases can dictate who gets diagnosed, and with what. It is true that visibility for eating disorders, and mental illnesses generally, has been expanding over the past decades. Even so, people like Tim—people who do not fit the gendered narrative of a mental illness—are still being left behind. Gender bias harms all genders.

Narratives and Stigma

How is a young actress with anorexia different from a middle-aged man with the same condition? Can a middle-aged man even have anorexia?

Public health campaigns now use multiple copies of the same message to target specific populations.

Images courtesy of the National Library of Medicine.

Public health campaigns have already developed effective strategies for helping diverse groups of people with mental illnesses. Successful anti-stigma campaigns have shown that culturally-appropriate materials are absolutely necessary, and that excluding them leaves scant hope for success (Clement, Jarrett, Henderson, & Thornicroft, 2011; Knifton, 2012). Designing culturally-relevant campaigns can be disarmingly simple, and in fact rely on standard marketing procedures. Companies market the same product differently to different audiences (like Toyota’s collection of Camry commercials), knowing a single message will not resonate with all communities. Stratifying the market like this can certainly be done poorly and without sensitivity (look no further than PepsiCo’s “Lady Doritos”). Still, the effectiveness of market stratification emphasizes the need to do the same for anti-stigma campaigns.

Anti-stigma messages are easier for people struggling with mental illnesses to integrate when they are delivered by people who look like them, or at least by people who understand them. The messages must explicitly address the lived experiences of their target audience and the specific stigma these people face. When done well, community-based anti-stigma campaigns can radically change how people view mental illnesses, giving a newfound empowerment to those with depression, anxiety, schizophrenia, and other such illnesses. Progress must start at the beginning—with how illnesses are described and defined. Both academics and clinicians can fall into the same traps as the media coverage of eating disorders even when no harm is intended. Illnesses known as “internalizing disorders,” including eating disorders and mood disorders, are still characterized in gendered—biased as women’s disease—terms (Hill & Needham, 2013; MacLean et al., 2015). Knowing that, is it any wonder that people of different genders would interact with those diseases differently?

Image courtesy of Pixabay.

Even the argument laid down here is problematically one-dimensional. Any male/female contrast leaves out anyone who identifies as nonbinary, which is exactly why narratives of the “typical” person with an eating disorder need to be retired. No single narrative can describe everyone in a group, no matter how small that group may be. To be clear, shared narratives can be extremely valuable, but they need to be inclusive to a breadth of lived experiences.

Personal Empowerment

There is still an active fight against the stigma of mental illness. People are still being silenced, and it is often because of self-censorship born from fear and shame. Many people’s narratives are not represented, and so they are left behind as other anti-stigma campaigns forge ahead. To empower people with mental illnesses to name their illness and seek the treatment they need, they need to first see themselves in the narrative of their illness. This will require many narratives in research, medicine, and public health campaigns to change and become more inclusive. Far from being inappropriately biased, deliberately amplifying diverse voices would go a long way in reducing personal biases and the self-stigma that goes with it. In the end, it will require all of us to acknowledge that people can present with atypical symptoms, but that does not classify the person as atypical.

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Nathan Ahlgrim is a fifth year Ph.D. candidate in the Neuroscience Program at Emory. In his research, he studies how different brain regions interact to make certain memories stronger than others. He strives to strengthen the brains of the next generation by leading neuroscience and psychology lessons in K-8 schools.

References

1. Clement, S., Jarrett, M., Henderson, C., & Thornicroft, G. (2011). Messages to use in population-level campaigns to reduce mental health-related stigma: consensus development study. Epidemiol Psichiatr Soc, 19(1), 72-79. doi:10.1017/S1121189X00001627
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Want to cite this post?

Ahlgrim, N. (2019). Stories and stigma: why so many mental illnesses remain hidden. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2019/03/stories-and-stigma-why-so-many-mental.html.