Stigma is one of the greatest problems in the daily life of someone who has a mental health problem, in particular those who have an eating disorder (ED); it affects them in all areas of existence, such as in the workplace, in their interactions with friends, family and the public. Stigma prevents people from seeking help, affects their physical health, and can lead to suicide (Beat, 2019). Research suggests that people with EDs attract more stigma and negative attitudes compared to other mental health disorders. People are often perceived by others as the main cause of their disorders; they are to blame for what they experience.
In this blog I review a paper by O’Connor et al. (2019) in the hope that we can find a new approach to stigma associated with EDs. What can a ‘mixed-methods systematic review’ tell me about my own experiences of stigma, and how can this article make a positive impact on our knowledge and awareness about this difficult, pressing topic?
This study brings together and reviews various research projects that examine and measure evidence of different kinds of stigma, as experienced by people with EDs. The authors state that understanding the implications of stigma and examining existing research that investigates how and where stigma is experienced by individuals with EDs, is an important and critical methodology.
Stigma is an old problem that other scholars have attended to, but not necessarily sufficiently. For example, see blogs by my Mental Elf friends David Steele (2014, 2015) and Francesca Solmi (2017), which discuss anti-stigma programs. So, how does this review add to the field and open insights about the stigma experienced by people who have EDs?
The paper engages its meta-review with a systematic mixed-methods search of existing literature. The abstracts examined by the authors have been chosen according to a “specified set of inclusion criteria, quality assessment and thematic synthesis” in accordance with PRISMA guidelines. Literature was selected using an electronic search with keywords, to find suitable articles in various databases.
29 studies met eligibility criteria and were included in the final sample. These were mostly qualitative and of “reasonable” methodological quality, with apparently good inter-reviewer reliability on the screening decisions of papers. Data were assessed according to the sub-themes of geographic region, ED subtype and how defined, theoretical framework, design, sampling strategy, sample characteristics, analysis, quality score.
The results show that studies conducted about stigma in relation to eating disorders (EDs) are rising, while people with EDs do experience a lot of stigma. The literature was organised into five themes:
The nature and prevalence of stigma experienced
A survey study found that 70% of people with EDs felt: “I should be able to just pull myself together” and “I am personally responsible for my condition” (Griffiths et al., 2015). Additionally, other studies showed that people felt socially marginalised, dismissed and judged, while they perceived their own symptoms as a “weakness” or “character flaw” (Becker et al., 2010).
Stigma in families
People with EDs also experience stigma from their own family, as well as in society at large. They feel their illness would shame or disappoint their families and they fear their judgement. The quantitative literature reviewed suggests that stigma can impact on family relationships and wellbeing, while judgmental attitudes towards EDs evidently causes tension and conflict within families.
Stigma in healthcare contexts
Several qualitative studies showed how ED stigma is evident in healthcare contexts. Patients feel that “staff overlook their concerns, don’t appreciate the severity of their distress, don’t understand EDs at all, judge them negatively as a result.” However, the evidence also highlighted instances where they received good healthcare.
Self-stigmatisation and illness concealment
Qualitative studies indicated that self-stigmatisation and illness concealment are very common. The ‘stigma-secrecy’ link is backed up by both qualitative and quantitative data. The research suggests that stigma-induced secrecy compromises people’s wellbeing in several ways, such as lowering self-esteem, increasing symptoms and the duration of the disorder.
Stigma resistance was defined as “the capacity to counteract or remain unaffected by the stigma of mental illness.” Comparisons of people receiving ED treatment, suggested that those who have recovered showed greater psychological resistance. Resistance was associated with fewer symptoms, active help-seeking and higher self-esteem. Overall, resisting stigma “may contribute to regaining psychological health.”
- This systematic review synthesised a range of existing literature on experienced stigma among people with eating disorders.
- The evidence enlightened the extent of different types of stigmatisation this population often face and the negative implications in their recovery and wellbeing.
- This review opens new research opportunities ahead and can inform the development of new public interventions and de-stigmatisation awareness.
Strengths and limitations
The authors note several limitations to their research:
- Potential reviewer bias – due to multiple reviewers screening and extracting data
- Use of a mixed-methods evaluation tool, which created a more generalised appraisal
- Restrictions regarding published material (e.g. books and grey literature)
The review synthesised existing research locating stigma, which is useful because it shows the extent to which this topic has been addressed in academic literature. From an academic viewpoint, it is interesting and sufficient. And yet, for people with EDs (including my previous self), we need more. The article states that a first-person perspective is important in analysing stigma, but it leaves this crucial character out.
Authors state that “most studies included samples with a range of ED diagnoses. None purposively selected participants with BED or EDNOS.” – this is a limited viewpoint. People with EDs are not only anorexic or bulimic. Binge Eating Disorder (BED), Eating Disorders Not Otherwise Specified (EDNOS), perhaps experience more stigma. The review concludes that “direct comparison of the stigma experiences of people with AN, BN and BED remains lacking.”
Another issue that was not addressed is the issue of gender bias in EDs, particularly the considerable debilitating stigma experienced by men or LGBTQ individuals with EDs. Surely gender is a crucial factor in ED stigmatisation, isn’t it?
I am particularly interested in the work done on ‘stigma resistance’. The paper agrees that the “perspective of people with EDs” provides an important insight into how people resist or challenge stigma. However, it then leads ‘stigma resistance’ towards the perpetuation of disordered behaviour, for example, in those highly-controversial ‘pro-Ana’ websites. There is a strong need for stigma resistance, to shift from ‘illness identity’ to ‘recovery identity’.
Very little data is used that shows people with EDs making suggestions regarding strategies for tackling ED stigma. As they say, “The review revealed limited qualitative data illuminating how frequently people with EDs personally experience stigma.” For the sake of de-stigmatisation, we need to ask these people – those who have EDs, who resist stigma.
Implications for practice
The article says that it ‘demonstrates the value of research conducted from the perspective of the targets of stigma, which contributes unique insight into how ED stigma unfolds in day-to-day life.’ We need more research. We need action to reduce this chronic, crucifying stigma. There are many under-researched areas: gender, comorbid EDs, cultural and ethnic divides. We need to hear directly from people who experience stigma, in relation to their EDs. The review has strong implications and opens the doors for “public interventions and new initiatives to address the various components of ED stigma, including labelling, stereotyping, distancing, and discrimination”. I am left wondering how, where and when we can turn theory into action.
My experiences of stigma and discrimination meant that I ‘pretended’ (even to myself) that I was not ill for many years. I thought I did not deserve treatment, I was ashamed of being so ‘weak’, I avoided (was discredited by) people. It took nearly two decades of being close to death from my complex, comorbid ED, before I finally found the help and support I needed to get well. Now I work with Time to Change, the aim of which is to target stigma and discrimination about mental illness.
“In order for people with eating disorders to feel safe enough to disclose, they need understanding. They need empathy. They need society to realise it isn’t a phase, it’s not basic insecurity, and that their pain isn’t trivial. They need public acceptance that eating disorders are a serious mental illness, and they need your support” (Stamp out Stigma)
Statement of interests
O’Connor C, McNamara N, O’Hara L. et al (2019) How do people with eating disorders experience the stigma associated with their condition? A mixed-methods systematic review, Journal of Mental Health. https://doi.org/10.1080/09638237.2019.1685081 (last accessed 08/12/19).
Austen, E. & Griffiths, S. (2018) Why do men stigmatize individuals with eating disorders more than women? Experimental evidence that sex differences in conformity to gender norms, not biological sex, drive eating disorders’ stigmatization, Eating Disorders: The Journal of Treatment & Prevention. 27, 3. https://doi.org/10.1080/10640266.2018.1499337(last accessed 08/12/19).
BEAT (2018) Time to Change Stigma. https://www.beateatingdisorders.org.uk/your-stories/time-to-change-stigma(last accessed 08/12/19).
Schoen E. et al. (2018) Gender bias, other specified and unspecified feeding and eating disorders, and college students: a vignette study, Eating Disorders: The Journal of Treatment & Prevention. 27, 3: 291-304. https://doi.org/10.1080/10640266.2018.1504536 (last accessed 08/12/19).
Solmi, F. (2017) The stigma of eating disorders: which interventions might help? https://www.nationalelfservice.net/mental-health/eating-disorders/the-stigma-of-eating-disorders-which-interventions-might-help/ (last accessed 08/12/19).
Stamp out Stigma, North West Boroughs Healthcare NHS Foundation Trust http://www.nwbh.nhs.uk/stamp-out-stigma/Pages/Eating-Disorders.aspx (last accessed 08/12/19).
Steele, D. (2014) Mental health anti-stigma programs are (broadly) successful, https://www.nationalelfservice.net/populations-and-settings/vulnerable-people/mental-health-anti-stigma-programs-are-broadly-successful/ (last accessed 08/12/19)
Steele, D. (2015) How can we reduce mental health stigma and discrimination? https://www.nationalelfservice.net/treatment/rehabilitation/treatment-education/can-reduce-mental-health-stigma-discrimination/ (last accessed 08/12/19)
Time to Change, let’s end mental health discrimination: https://www.time-to-change.org.uk (last accessed 08/12/19).
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