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Mental illness: the ignored side of HIV

By Flavia Nassaka

Experts call for integration of mental health care for the positive at all levels

One Tuesday morning recently, a man who looked to be in his 60s walked into the Independent Publications office with a story so important, he said, it had to be published immediately.

With a charming smile, he introduced himself. He was in fact 49 years old, and a former accountant. He said he has been living with the HIV virus knowingly since he tested positive in 2007. He does not know when he got infected, he said, but finally he had found a solution for it. He said HIV/AIDS, like some other diseases, could be cured by surgery. He had tried it out on himself.

“Am now fine,” said the man who stutters from partial paralysis on one side of his face, walks with a limp and aid of a cane, a by his own description, has wounds on his rectum from his self-inflicted “surgery”.

“I did it so that more people can be saved from permanent pain and death. Just like me, they’ll not have to take ARVs anymore,” he said excitedly. He said he wants the government to set up a body to enable surgeons to consult him.


It would have been a hilarious tale if it was not so painful to listen to. As is well-known, HIV/AIDS has no cure at present.

When Dr David Basangwa, a psychiatric consultant and Executive Director of Butabika Mental Hospital, heard it, he was in no doubt the man telling the story is suffering from a mental illness. Dr Basangwa said he could be suffering from delusion disorder; a serious mental illness where the sufferer cannot tell the difference between what is real and what is imagined.  It involves one getting false or erroneous beliefs that usually involve misinterpretation of perceptions and beliefs adding.

Dr Basangwa said the illness is not uncommon among HIV/AIDS patients because up to 96% of HIV positive patients develop mental illness symptoms at some point. He said patients breakdown because a lot of HIV; as a virus, lives in the brain and causes damage to the brain tissue leading to mental disorders.

He said most suffer from depressive disorders in which they are sad and worried for abnormally long periods. Other mentally HIV positive people suffer mental abnormalities with technical names like obsessive compulsive disorders, bipolar disorders, mania and anxiety. Mental illness is sparked by the mere imagination that one has HIV/AIDS, a condition one must live with for the rest of their life. Most of them have feelings of self-rejection. When they first receive news of the word “positive,” many are thrust into feelings of worthlessness, anger, and sadness which gradually translate to psychiatric disorders.

The implications of the mental disorders can extend beyond emotional health to cause physical problems, Dr Basangwa says. Often, depressed patients fail to stick to their medicine routine as recommended.

To attempt to grasp the extent of the problem of mental illness as a result of HIV/AIDS, one must imagine that 96% of the 1.3 million people living with HIV/AIDS in Uganda have at one point been affected.  Dr. Seggane Musisi, a psychiatrist at Nakasero Hospital in Kampala says at least 56% of these develop chronic depression, a condition that makes one depend on psychiatric drugs for their life time.

Mental Health Overlooked

Despite the high prevalence, mental illness linked to HIV/AIDS, little or no special attention is being devoted to it. There is no doubt that a lot has changed in the treatment of HIV/AIDS as a medical condition. In contrast from the height of the epidemic in the 1980s and 1990s when people were dying with no care and treatment, today Antiretroviral drugs (ARVs) enable patients to lead normal lives. But treatment of HIV/AIDS as a mental health condition is lagging. Mental health care is non-existent at most health facilities.

Dr. Michael Bayigga, a member of the Parliamentary Committee on Health, says mental health is rarely mentioned when discussing HIV. He wants the government to focus on building systems to support continuous and responsive care throughout the care and treatment of HIV/AIDS patients at all levels; from VHTs to national referrals.

Currently, HIV positive mental patients have to scramble with the rest for health services as there are no special public support programmes for them at least according to Derrick Mbuga, the Executive Director, Mental Health Uganda, a Civil Society Organization that advocates for the rights of the psychologically unstable. He says mentally ill HIV/AIDS patients should not be scrambling with the rest for health services. He says the mentally ill need special support programmes.

He says some private institutions that offer some special help, have a low awareness about such services and their capacity cannot absorb the big numbers of people. At private facilities like MildMay, only a fraction receives mental healthcare.

Mbuga says some patients live in places that are too far from Butabika Mental Hospital and are referred when their condition has worsened and can sometimes not be reversed. Unfortunately, at this time the patient has no choice but to battle with two regimes of strong medicine for two chronic diseases.

Mbuga wants the government to involve community mental health teams in the same way as it has Village Health Teams (VHTs). He said these bring services and expert support closer to the patients instead of focusing on institutional psychiatry because not all patients can go to the general, regional or national mental referral hospitals.

“In both HIV and psychiatric problems, a support mechanism is more important and the reason we see people developing more complications is because of lack of support both at family and health facility level. For both cases, stigma is still rife and this continues to hinder basic service delivery,” he says.

Dr Seggane and some colleagues have done research into effective models for integrating depression treatment into HIV care across the country.  They found that all the government needs is to retool all health workers so as to integrate mental care into HIV care and treatment and the general primary health care.

“A health worker is trained to treat people not diseases. They, including lower cadre workers, should be able to diagnose all conditions of a patient and offer holistic treatment. They can refer the special cases,” said Prof. Seggane.

Dr Seggane notes that there’s a shortage of Psychiatrists which also remains the key challenge. With a population of 35 million people, Uganda has only 34 Psychiatrists. But he says this is not a major issue other health workers like psychologists, social health workers and counselors could be trained to give the patients options.

He says some clinics and hospitals do not do mental assessments to patients who go for HIV services because of the big numbers of patients and few health workers.

He advises that some of such problems could be solved if they came up with a policy just like prevention of Mother-to- child transmission of HIV/AIDs where everyone who tests positive has to have a mandatory mental health assessment.

Coping with mental illness linked to HIV/AIDS

Psychiatrists say the HIV positive suffer from dementia due to viral infection of the brain. Depression and anxiety are mainly due to the impact of the infection on the person’s life and the psychiatric side-effects of some antiretroviral therapy that sometimes cause disorders. Social difficulties faced as a result of stigma and discrimination also aggravate the problem.

In addition to support from health facilities and medication, experts say there are many avenues through which patients can cope with HIV without necessarily falling prey to mental disorders. They say there are a number of copying strategies but no one coping strategy will best serve all patients.  The following can help.

“Most times these psychotic symptoms are a result of people not revealing their conditions to another party. Definitely, they’ll end up making wrong decision and could develop another complication out of that”, says Dr. Margret Mungherera a Mulago based psychiatrist.

Dr Basangwa agrees with Mungherera saying it is important for people not to entirely be isolated since social support could help them cope better and comply with taking medicine.

He explains that experts never recommend for patients to disclose or not to disclose their condition.  Patients, basing on understanding their conditions probably through psycho education, should decide whether other people should know about their conditions.

He says 90% of the patients at the Butabika HIV clinic who have a number of people aware of their status show signs of improvement from psychotic symptoms quickly.

Margret Katasi of The Aids Support Organization (TASO) advises that such people should not only look at their friends and relatives for support but there are a number of other organized groups that can offer support.  She says such groups pool together people of quite similar problems which makes getting assistance and also indentifying one’s problem easy since within such groups, individuals feel open discussing their status.

Dr. Mungherera points at seeking professional support from a counselor, psychiatrist or psychologist to be beneficial to people who have just learnt that they are positive. She says this prepares the brain to accept the new conditions. “If people are having difficulties, and difficulties are quite common, seeking mental health services is absolutely appropriate and can be incredibly helpful.”

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