Taking Care of Mental Illness Storytellers

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Status: Finished  |  Genre: Non-Fiction  |  House: Booksie Classic

An academic essay, not previously published anywhere, that talks from my experience about a little considered fact when using people to tell their mental illness stories online to a potential world-wide audience.

Disclaimers Before Reading:

The cover photo for this essay is from Unsplash and is royalty free. Using the photo does not imply that the people shown in the photo are part of this essay in anyway.

This essay is a how-to academic essay. It was written by me because as more people tell their mental health stories online, the more issues arise about how to manage being known to a potential billion or more people about one’s mental illness.

Mental illness stigma is important to address, but caution still needs to be exercised if a person decides to tell online about one’s lived experience. This is why it is important to discuss this issue, so those living with mental illness are not exploited by others. Even though anti-stigma campaigns are well-intentioned, they require care of those that expose themselves to a worldwide audience.

 

Taking Care of Mental Illness Storytellers

 

Societal and self mental illness stigma continues to lessen across cultures as more people tell their lived experiences in anti-stigma campaigns. These potentially change peoples’ attitudes to those with mental illness and foster empathy and compassion. Stigma, a harsh and debilitating label, was defined by Sociologist Erving Goffman (1963) as deeply discrediting to the person living with a severe mental illness, making a person tainted and discounted in a culture. Rejection often occurs with resulting social exclusion and discrimination (Link et al. 2004), and causes harm as they create negative perceptions of those with mental illness, such as the person being a danger to society (Corrigan and Nieweglowski 2019).

 

Mental illness storytelling experiences have often occurred through the creative arts, such as poetry, artwork and story writing. These have engaged audiences and encouraged examination of attitudes a person has towards those living with mental illness (Haigh and Hardy 2011; Gidman 2013; De Vecchi et al. 2016). Using the internet in anti-stigma campaigns potentially exposes someone to an audience of millions. Research has provided evidence that these campaigns are effective. For example, in New Zealand, a long-term anti-stigma campaign found a reduction in discrimination experienced by those surveyed who had a mental illness (Thornicroft et al. 2014). Maulik et al. (2017) also found that an anti-stigma campaign in rural India significantly reduced stigma, resulting in more people seeking help for mental health issues. 

 

Whilst anti-stigma campaigns have proven to change societal attitudes towards mental illness, little discussed and examined are the potential effects on the storyteller. Telling their private struggles with mental illness is a privilege that requires care and support. Informing the storyteller about the level of potential exposure and risks associated with this when their story is published online is important. This contrasts with high-profile people, such as celebrities, royalty, sportspeople and public figures, who often work from scripts and are carefully groomed in the words they deliver. Others telling their lived experiences can be honest, over share, and perhaps be confronting for the audience to listen to. Therefore, a degree of preparation and discussion before participating is advisable.

 

An anti-stigma campaign seeks to educate and inform people about mental illness. It aims to change peoples’ attitudes through giving the audience knowledge about mental illness. The internet is often a less intimate medium than speaking in public, but offers a larger audience to hear storytellers. Some examples of anti-stigma campaigns have included: Time to Change (United Kingdom), Every Mind (Australia), Mental Health America (United States) and SMART Mental Health (India). As well as using online videos for storytelling, they also send people to present their stories to organizations, removing the sometimes impersonal nature of online video viewing.

 

An important part of an anti-stigma campaign is ensuring the risk of the storyteller being highly visible does not set back their own mental illness recovery. Speed and Taggart (2019) and Faulkner (2017) argue that the common social contact approach, used by many campaigns, can produce hierarchy and power relations. To clarify, careful thought should be given to the storyteller’s proposed disclosure about their mental illness. The possible permanent nature of being identified as having a mental illness, especially online, is important to consider. For example, some storytellers may want to return to paid work one day. Being seen in an anti-stigma campaign can possibly, though not always, hinder their ability to obtain employment. This is a power relation imbalance because the person has aimed to educate society about mental illness, yet may experience a stigma through their online identification of being mentally ill.

 

However, despite such risks, participation in anti-stigma campaigns can be a successful part of a person’s psychosocial rehabilitation. The Clubhouse Model of Psychosocial Rehabilitation for example offers a safe and supportive environment where members can do digital storytelling of their experiences. An important part of the model, acknowledging the stigma of being called a patient, is referring to people who attend as members (Beard et al. 1982). This is made clear that they are members, not patients, in their anti-stigma campaigns as a way of humanizing the mental illness experience. Many clubhouses worldwide have undertaken various forms of anti-stigma campaigns and engaged with the community to educate society about mental illness, including using storytellers’ lived experiences.

 

Importantly, as part of Clubhouse Standards, participation in campaigns is voluntary. No member is forced to have their stories filmed and placed on social media. Although members may have many valuable stories to tell, they are informed of possible consequences of being filmed. This degree of care is very important. Confidentiality under the model is highly valued. Some members may not wish to be known they attend a clubhouse suggesting stigma fears from being found out is a real concern (Paananen et al 2020). Yet some members agree to be photographed, have their names suppressed, use only their first name or prefer to speak but not be filmed. All these are valid ways of participating in an anti-stigma campaign with the Clubhouse offer support to the storyteller at all times should any issues arise over their participation in them. 

 

It is not suggested other organizations do not protect and support participating storytellers.  As mental illness and stigma becomes more discussed, more people feel a genuine need, perhaps even duty, to talk to others about their experiences. Confidential legal and ethical reasons prevent researchers finding out organizational policies that protect people post storytelling. Nevertheless, some general frameworks and suggestions for practice place the storyteller’s mental health care at the forefront of participation in anti-stigma campaigns. For example,

 

  • The size, scope and audience type need to be disclosed early to the storyteller, especially as it is likely some or all of their contribution will be broadcast on the internet, so they can decide if they want to proceed with being identified as having a mental illness.

 

  • The storyteller should be informed if being filmed that their video may be edited for any reason, to avoid disappointment should they feel their story is no longer authentic.

 

  • The campaign’s nature, style and subject matter need to be discussed with the storyteller as it may distress them and hinder their recovery.

 

  • The storyteller must be fully aware of any cultural or other consequences should the campaign involve race, gender or sexuality issues specifically related to mental illness.

 

  • There must be an option after disclosing the requirements for the storyteller to refuse to participate and be given the choice to ask for removal of their content in the future, though this is still an unclear area about who owns the copyright of the material as usually it is the organization.

 

  • It is vital that the storyteller be aware that identification as being mentally ill risks one’s reputation, especially for employment, as employers do search the internet for information on potential employers.

 

  • Above all, psychological support, or peer support such as that found in Clubhouses, should be able to be accessed by the storyteller should distress or concerns arise from participation in the campaign.

 

It is difficult to formally assess and quantify if these procedures always take place as organizations will usually not disclose such private details. Nevertheless, these are desirable practices because although many are willing to be identified as living with a mental illness, our less private online age increases the risks of possible discrimination for participation.

 

Finally, studying storytellers participating in anti-stigma campaigns and documenting their experiences is a potential new field to research in greater depth. Building a body of literature to inform practice and develop possible theories of post campaign involvement is important. The storyteller can give insights into post campaign issues that are presently not paid great attention to. Such approaches would be ideally placed in a psychosocial rehabilitation context identifying what effects participation in campaigns has on the individual’s recovery.

 

This debate argues not only for taking care of storytellers who disclose their stories in anti-stigma campaigns, but also calls for more research work in this area. These campaigns are effective in changing societal and individual attitudes towards those living with a mental illness. A benefit of paying greater attention to this area of inquiry is how we can support the storyteller who risks much to educate societies and remove mental illness stigma.

 

References (In order of appearance)

 

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. London: Penguin.

 

Corrigan, P., Nieweglowski, K. (2019). How does familiarity impact the stigma of mental illness?  Clinical Psychology Review, 70, 40-50.

 

Link, G., Struening, E., Neese-Todd, S., Asmussen, S., Phelan, J. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363-385.

 

Haigh, C., Hardy, P. (2011). Tell me a story - A conceptual exploration of storytelling in healthcare education. Nurse Education Today, 31(4), 408-411.

 

Gidman, J. (2013). Listening to stories: Valuing knowledge from patient experience. Nurse Education in Practice, 13(3), 192-196.

 

De Vecchi, N., Kenny, A., Dickson-Swift, V., Kidd, S. (2016). How digital storytelling is used in mental health: A scoping review. International Journal of Mental Health Nursing, 25, 183-193.

 

Thornicroft, C., Wyllie, A., Thornicroft, G., Mehta, N. (2014). Impact of the “Like Minds, Like Mine” anti-stigma and discrimination campaign in New Zealand on anticipated and experienced discrimination. Australian & New Zealand Journal of Psychiatry, 48(4), 360-370.

 

Maulik, P., Devarapalli, S., Tewari, S., Chilappagari, M., Koschorke, M., Thornicroft, G. (2017). Evaluation of an anti-stigma campaign related to common mental disorders in rural India: a mixed methods approach. Psychological Medicine, 47, 565-575.

 

Corrigan, P., Morris, S., Michaels, P., Rafacz J., Rüsch, N. (2012). Challenging the public stigma of mental illness: A meta-analysis of outcome studies. Psychiatric Services, 63, 963-973.

 

Speed, E., Taggart, D. (2019).  Stigma and mental health: Exploring potential models to enhance opportunities for a parity of participation. Journal of Ethics in Mental Health, 10, 1-19.

 

Faulkner, A. (2017). Radical change or warm sentiments: A commentary on Gronholm et al. (2017) Interventions to reduce discrimination and stigma: the state of the art. Social Psychiatry and Psychiatric Epidemiology, 52(7), 777-779.

 

Beard J., Propst, R., Malamud, T. (1982). The Fountain House Model of Psychiatric Rehabilitation. Psychosocial Rehabilitation Journal5(1), 47-53.

 

Paananen, J., Lindholm, C., Stevanovic, M., Weiste, E. (2020). Tensions and paradoxes of stigma: Discussing stigma in mental health rehabilitation. International Journal of Environmental Research and Public Health, 17(5943), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7459444/pdf/ijerph-17-05943.pdf

 

 

 

 


Submitted: November 19, 2020

© Copyright 2020 michaeln. All rights reserved.

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