HIV and Mental Illness - Positive Solutions

posted: 16/11/2009

Stigma often represents the most crucial element effecting people living with a wide range of illnesses. It negatively affects efforts to treat and prevent disease, and adversely affects individuals’ quality of life. The type of stigma varies with different conditions. This article highlights some causes and differences between the stigma associated with mental health compared with HIV, as well as successful strategies of reducing its impact.

Definitions of stigma include

• social identity (deviance from what is normal),
• power discrepancies (that allow discrimination), and
• discrediting attributes that devalue people living with certain illnesses, such as HIV.

Stigma often appears as discrimination, hatred, intolerance, rejection, and exclusion.

Unrecognised internal stigma damages
However what is often under-recognised is the internal aspect of stigma. Internal manifestations can include self-loathing, shame, and self-blame – an intention behind the stigmatising comments and actions. The stigma can spread to others associated with the stigmatised individual or condition – such as family, friends, and even to institutions and clinics. As a result anyone associating with patients, or visiting centres, can be dragged into the net of stigma.

It can be helpful to consider stigma in other conditions so we can understand how it works differently (or the same) in HIV better. The article next considers people living with mental illness. People who have depression, schizophrenia, and other mental illnesses, commonly report stigma from both community and health professionals. Depression and schizophrenia affect millions of people. Of these, only 25% of those with depression, and 50% of those with schizophrenia who are in need of treatment are getting the right treatment. This suggests that stigma, at least in part, may be having an affect on treatment of mental illness. The perception of depression as a weakness rather than an illness; or that people with depression are dangerous, and ‘schizophrenics’ are violent remains deeply embedded in public opinion.

Why are many other conditions NOT stigmatised?
Stigma is far less likely with other common illnesses for example cardiovascular disease. Unlike mental illnesses, cardiovascular disease is less stigmatised at least in part because the causes, disease development and successful treatments are well known.

Does Fear of the Unknown  makes Stigma stick?
The fear of the unknown may be what makes stigma stick to certain illness. This makes people afraid to tell family and friends, and not seek help when they need it. Health staff, even those in mental health can also stigmatise through intensive use of language and labelling. Some healthcare staff show more human empathy and understanding, but some define the person by their illness. The difference in language is powerful – a ‘schizophrenic’, whose behaviour defines them, versus a ‘person living with schizophrenia’, whose illness causes altered behaviour. This labelling may plague the patient as a ‘life sentence,’ reducing self-esteem, withdrawing social opportunities, and creating ongoing employment difficulties, ultimately ruining any chance of normality.

People living with HIV
Many people with HIV across the globe are not on treatment that is needed. One of the biggest issues preventing treatment uptake is stigma. However, the stigma signature associated with people living with HIV is different to that explained for mental illness.

Bos and colleauges suggest how stigmatisation of people living with HIV works. They describe how

• perceived contagiousness (everyday contact, not just sex),
• perceived seriousness (life-threatening),
• personal responsibility (unsafe sex) and
• norm-violating behaviour (e.g. male-to-male sex, and intravenous drug use)

all contribute to increase fear and anger, while decreasing pity for people living with HIV.

Stigma also surrounds certain groups at increased risk, such as

• homosexuals,
• intravenous drug users,
• migrants, and
• sex-workers.

This further stigmatises people living with HIV leading to yet more discrimination and negative social responses. As a result, people living with HIV have a lower quality of life and are less likely to test, get treated, seek advice, information and counselling, or disclose their status to people who could help with support. This can result in late diagnosis with high viral loads, low CD4 counts, and opportunistic infections.

Strategies for Reducing Stigma
The need to deal with stigma is paramount to reducing the HIV epidemic, and increasing treatment uptake.

Accurate knowledge and portrayals of HIV survival and recovery, as well as the true risk to the community from HIV needs to be thoroughly promoted especially in the media.

Telling others helps
Public disclosure of HIV status helps both the individual and the surrounding community. Individuals are often very scared and describe this as the most difficult and dangerous thing to do. After telling people feel empowered, released from a heavy secret, and less isolated and withdrawn, taking back control of their lives.

To help facilitate this appropriate training and support needs to be given before disclosing to prepare for potential negative reactions from people. However, public speaking regarding one’s positive living helps to make the community more aware and dispel myths around HIV, thus reducing stigma. This is echoed by studies involving public speaking by people living with HIV and mental illness, which have shown improved attitudes among high school students to those living with the illness.

One Voice
Uniting all people with stigmatised illness would provide a voice that would be far too loud to ignore.

Access to relevant treatment that communities understand is effective and essential in any stigma reduction programme. Universal access to HIV therapy in Botswana (which has the 2nd highest prevalence), implemented in 2002, provides clear evidence of reducing stigma. Wolfe and colleagues demonstrated pre- and post-implementation that only 31% of people had disclosed positive HIV status to family, and 5% to friends in 2001, compared with 90% and 55% respectively in 2004. Other examples of reduced stigmatising attitudes include an increase in the number of people that would care for a person living with HIV, accept them as a teacher and buy food from a shopkeeper with HIV.

Conclusion
Stigma and its consequences affect the course of illness for many millions of people worldwide. It provides an enormous barrier to all attempts to help people living with stigmatised illnesses. Stigma affects all, it endures, and it compromises survival and recovery of those most in need. We must strive to find new ways to abolish stigma, and thereby allow access to treatment and empowering positive living.

Source with detailed references – full article online free
 

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