Yesterday I came across an article by Antonio Lasalvia and his colleagues, published online in the Lancet in October 2012, that explores the nature and severity of experienced and anticipated discrimination reported by adults with a diagnosis of ‘major depressive disorder’ worldwide.
Moreover, the article reports on research that investigated whether experienced discrimination is related to clinical history, provision of health care, and disclosure of diagnosis and whether anticipated discrimination is associated with disclosure and previous experiences of discrimination.
I found the article interesting and thought provoking. Issues of stigma and discrimination in people with a diagnosis of ‘major depressive disorder’ resonate deeply with me given my own past diagnosis of ‘psychotic depression’ and how profoundly I have experienced these issues myself- i.e. how profoundly I have experienced the self-stigma and self-devaluation that internalising the negative effects of perceived discrimination has precipitated for me.
In the above mentioned article, (mental health) stigma is defined as ‘a mark or sign of disgrace’ setting a person with mental health difficulties apart from others. Stigma involves dimensions of knowledge (ignorance; misinformation), attitudes (prejudice; affective distancing) and behaviour (discrimination).
Depression-related discrimination is defined as ‘the behavioural aspects of (mental health) stigma’, as ‘rejection of and negative behaviour towards people with depression’. It is indicated that discrimination can cause low rates of help seeking, lack of access to care, under-treatment, material poverty, and social marginalisation.
These eﬀects can be a consequence of experienced (actual) discrimination (eg, unreasonable rejection after an application for work), or a consequence of anticipated discrimination (eg, when an individual does not apply for a job because he or she does not expect to be successful).
For the research the above mentioned article reports on, adults with a diagnosis of ‘major depressive disorder’ were interviewed in 39 sites (35 countries) worldwide with the Discrimination and Stigma Scale. 1082 people with that diagnosis completed the Scale in question. 79% of them reported experiencing discrimination in at least one life domain.
The domains reported most often were family, making or keeping friends, marriage or divorce, keeping a job, personal safety and security, and intimate or sexual relationships. Importantly, nearly a third of participants reported that they had been avoided or shunned by other people because of their mental health problems.
37% of the participants had stopped themselves from initiating a close personal relationship, 25% from applying for work, and 20% from applying for education or training. 71% of the 1082 participants actively wished to conceal their depression from other people.
Higher levels of experienced discrimination were found to be associated with several lifetime depressive episodes, at least one lifetime psychiatric hospital admission, and poorer levels of social functioning. Experienced discrimination was also found to be associated with lower willingness to disclose a diagnosis of depression, whilst anticipated discrimination was not necessarily associated with experienced discrimination.
The authors conclude that experienced discrimination in people with a diagnosis of ‘major depressive disorder’ appears to be high in the diﬀerent countries, with rates in some life domains (eg, family and social relations) substantially similar to those in people with schizophrenia. Discrimination related to depression appears to act as a barrier to social participation and successful vocational integration. Non-disclosure of depression is itself a further barrier to seeking help and to receiving eﬀective treatment.
The authors also note that the levels of discrimination in their study might be underestimates because people with very high levels of experienced or anticipated discrimination could have avoided service contact, whilst study participants were selected from patients who were treated rather than true prevalent cases in the community.
Commenting on the study finding according to which experienced discrimination appeared to be positively associated with having been admitted to hospital for psychiatric treatment (Having at least one lifetime psychiatric hospital admission featured as a strong predictor of reported discrimination), the authors remarked it might suggest that people with depression might perceive speciﬁc mental health-care facilities as more (eg, psychiatric hospitals) or less (eg, outpatient settings) stigmatising.
In a similar vein, stigmatisation has been found to be lower in outpatients without schizophrenia who were treated in a general hospital than in those treated within large state psychiatric hospitals. The authors suggest that there might be a service-speciﬁc eﬀect on reported discrimination with self-esteem having a mediating eﬀect on service perception (ie, more coercive and institutionalising settings being associated with low self-esteem, and more empowering and recovery-oriented settings being associated with increased self-esteem).
I can certainly relate to that. I experienced my hospitalisation and sectioning back in 2009 as deeply stigmatising and giving rise to profound feelings of shame and self-devaluation for me.
Furthermore, addressing the question as to whether higher levels of anticipated and experienced discrimination are associated with lower willingness to disclose a diagnosis of depression, the authors note that in their study people with higher levels of anticipated discrimination were less likely to disclose their diagnosis of depression. Non- disclosure of depression might be a barrier to help seeking and receiving eﬀective treatment. People with depression might avoid treatment because of concern that they will be negatively judged or discriminated against by other people.
The authors remark that non-disclosure of mental health problems (linked to anticipated discrimination) is also a crucial issue in employment because in some countries individualised reasonable adjustments or accommodations in the workplace for people with mental health difficulties can only be made if the employer has knowledge of the employee’s disability. The authors conclude that the issue of employment and mental health disclosure is a complex one:
complete or selective disclosure might work for some people whereas non-disclosure might be best for others, and the more correct approach (disclosure vs non- disclosure) might change as an individual moves through phases of recovery.
I can certainly relate to the complexity of the issue of mental health disclosure in the context of employment- in my experience, full disclosure of my mental health history was linked to (and perhaps led to) what could be perceived as stigmatising and differential/discriminatory treatment in relation to my occupational health clearance at the University where I am based.
Finally, touching upon the issue of strategies to tackle stigma and discrimination related to depression, the authors suggest that ‘new and sustained approaches are needed…to prevent stigmatisation of people with depression, minimise discrimination towards people with depression at individual, institutional, and structural levels and identify eﬀective strategies to reduce anticipated discrimination by people with depression towards themselves’.
Download the entire article by Lasalvia and his colleagues here:
Given that experienced discrimination in people with a diagnosis of ‘major depressive disorder’ (and with mental health difficulties at large) appears to be high worldwide, I am wondering how useful and effective the various anti-stigma campaigns have been.
Take the Time to Change anti-stigma campaign in England for example. On the Time to Change website (www.time-to-change.org.uk) it is proudly announced that ‘Mental health has been the subject on everyone’s minds in 2012’ and that ‘Time to Change, England’s biggest mental health anti-stigma programme run by the charities Mind and Rethink Mental Illness, celebrates a milestone year for tackling mental health stigma’.
On the same website ‘taboo tackling’ highlights/achievements are listed, including ‘more celebrities speaking openly about their own experience of mental health problems, which encourages others to do the same’.
Whilst not doubting the overall potential beneficial impact of the Time to Change programme with respect to tackling mental health stigma and discrimination, I am wondering how influential or relevant for me personally has been seeing celebrities such as Stephen Fry or Ruby Wax talking publicly about their experience of mental health difficulties…
I am wondering how influential or relevant for me personally confessions of such celebrities about their mental health problems have been when it comes to dealing with the painful reality of my self-stigma and the profound feelings of shame and self-devaluation that my mental health crisis and sectioning back in 2008-2010 gave rise for me…Not particularly relevant or influential, I guess…although I do applaud the willingness of Stephen Fry and Ruby Wax and other celebrities to speak openly about their mental health histories…
‘Major depressive disorder’, stigma and discrimination: How far have we truly come, then?