She cried, would not eat, and rarely left the house. For the first year after being told she was HIV-positive, Gertrude Namasembe believed the only step left in her life was to die. That was more than 15 years ago.
Namasembe, 35, now smiles and laughs while chatting with fellow members of a drama group organised by The Aids Support Organisation (TASO) Mulago branch in Kampala.
As a member of the drama group, Namasembe participates in outreach activities, including traditional dances, to inform communities about the importance of getting tested for HIV and protecting themselves against the virus.
However, Namasembe was not always open about her status. She was initially devastated by the diagnosis and feared what people would think of her.
“I thought HIV was for mature people. I would say, ‘No look at me, I am young. People will start blaming me,” recalls Namasembe.
Counsellors who worked with an Amref Health Africa testing clinic encouraged her to take her results to TASO so she could receive treatment and find a long-term counsellor. She eventually agreed.
“It was because of those counsellors that I am still alive,” she says.
Emotional toll of HIV/Aids
The psychological and neurological effects of HIV are invisible and consequently, countless people living with the disease struggle to cope, often without any support.
The shock of the diagnosis is often followed by many other stressors such as discrimination, poverty, breakdown of marriages, and long-term health challenges all factors that can lead to mental health problems like depression, anxiety and substance abuse disorders.
“It is a stigmatised disease and it has complications. To cope with just that alone is a mental health mountain,” says Dr Seggane Musisi, a professor of psychiatry at Makerere University.
The human immuno-deficiency virus has also been found to affect the brain, causing significant changes in a person’s behaviour and mood and can even lead to dementia.
“Within a few weeks, it is in your brain, with or without overt symptoms. But, eventually, symptoms will come, and you have to deal with that,” Dr Musisi explains.
Studies in Uganda and other Sub-Saharan countries have estimated that anywhere from three to 54 per cent of people with HIV/Aids experience major depressive disorder, let alone other mental health problems.
Dr Eugene Kinyanda, head of the mental health project at the Uganda Virus Research Institute (UVRI) Aids research unit, has studied the connection between HIV and mental health. A study he conducted on HIV positive adults in Entebbe found that 8.1 per cent of people had major depressive disorder and 7.8 per cent of people were at moderate to high risk of suicide.
HIV positive adults are not the only people at risk of mental health problems.
Children and teenagers born with the virus or who contracted it at an early age, and older adults who may have had it for many years are also at risk.
All ages affected
Dr Kinyanda is researching the types, prevalence and risk factors of mental health issues among childrenwho are HIV positive, to better understand their experience and need for treatment.
The study which is following 1,260 Ugandan children and adolescents between the ages of five and 17 over the course of a year is the largest of its kind to be conducted in Africa.
“HIV affects the whole age spectrum in this country,” Dr Kinyanda says, adding, “Most of the initial work we have done has looked at psychological problems in adults but to complete the picture we have to look at children and adolescents.”
In addition to investigating the symptoms and contributing causes of mental illness, the study is also exploring genetic links to mental illnesses and how mental health affects the children’s lives at home and at school.
“We hope all this information is going to lead us to solutions,” he says.
Although the study is ongoing, preliminary results confirm that many HIV-positive children are experiencing a “considerable burden of psychological problems according to the lead researcher.
In some cases, children have attempted or thought of attempting suicide.
“There has really been no formal support mechanisms for these children,” Dr Kinyanda concludes.
The need for mental treatment for hiv/aids
Mental illness can be treated, and those who receive counselling or psychiatric care find the services life-changing.
“I have seen marriages that have broken down completely, that were non-functional become functional again after treatment of depression,” says Dr Seggane Musisi, a professor of psychiatry at Makerere University.
He provides psychiatric care at Mildmay Uganda, an HIV treatment centre that is among the few to offer mental health services. Treating children, he says, is the most rewarding work he does.
“You just give them an anti-depressant and you see them come around, going to school and being normal again,” he says.
But for people who can’t access mental health care, the consequences are dire.
“If you don’t treat mental health problems, people don’t take their medications regularly. That causes resilience of the virus, that spreads the virus more,” Dr Musisi says.
It can also lead people to engage in reckless behaviour such as unprotected sex or substance abuse.
In real life
When his three children and wife died without explanation in the early 1990s, Robert Walakira turned to alcohol and drugs to cope with his grief.
He paid thousands of shillings to witchdoctors to fight off what he believed was a curse over his home. Their spells proved to be futile.
When Walakira began losing weight and feeling weak, a friend encouraged him to get an HIV test. He tested HIV positive and was referred to TASO Mulago, where he received counselling and support to wean himself off alcohol and drugs.
“If it was not for TASO, (I) would have died a long time ago. (I) gained hope because of counselling,” Walakira says through a translator.
Solutions on the horizon
Efforts are being made to expand the availability of mental health care to people living with HIV.
Dr Eugene Kinyanda, head of the mental health project at the Uganda Virus Research Institute, says the ongoing study with HIV positive children will help create new methods of treating mental health among youth.
He has also developed a proposal to integrate mental health care at HIV clinics for adults. He hopes to find the funding to launch a pilot project to test the integration method.
“We always need very rigorously conducted studies to show whether these things that we are proposing to work, work,” Dr Kinyanda said.
If his model of integrating mental health services proves successful, it could be a model for the Ministry of Health to replicate at HIV clinics across the country.
“Mental health is with us and is an important aspect of our health, and we should pay attention to it,” he says.
What is mental health?
World Health Organisation (WHO) defines mental health as “as the state of well-being” where a person realises their potential, copes with normal stresses of life, and is productive at work and in their community.
Mental health problems include, but are not limited to, depression, anxiety, post-traumatic stress disorder, and psychosis. Symptoms can vary but are often characterised by abnormal thoughts, emotions and behaviours.
Many people who live with a mental health problem or are developing one try to keep their feelings hidden because they are afraid of other people’s reactions. Many people feel troubled without having a diagnosed, or diagnosable, mental health problem – although that does not mean they are not struggling to cope with daily life.
Like physical illness, mental illness is treatable through counselling, therapy and medication.
Mental illnesses are common. WHO estimates that 13 per cent of the adult population globally experienced some form of mental illness in the past year.
Factors that increase the risk of mental health problems include poverty, lack of food, and other negative life events.
“An HIV diagnosis can be a life event spurring growth and maturity, or it may trigger emotional trauma and the manifestation of mental health disorders, or engaging in addictive behaviours (approximately 15 per cent of all adults who have a mental disorder also experience a co-occurring substance use disorder.”
Lisa Cox, PhD, American society of aging