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The absurd loneliness that comes with mental illness diagnosis

There was a time I visited an [old student] from my former school who had given birth; I remember her yelling at me, ‘Go away! You will strangle my child!’ That time I wasn’t even ill. Up to date I still think of those words,” Paul Kigozi, 29, sums up the kind of stigma and discrimination he has faced since 2009, when his mental illness was identified.

When the UACE results of 2008 were released, he had been looking forward to joining university. That dream was stopped by a mental breakdown. He was diagnosed at Mulago hospital with Bipolar Disorder, a mental illness that manifests through extreme mood shifts.

The stigma from his community in Gganda, Nansana municipality, was immediate. He says almost all his friends started “sidelining” him. Then the verbal comments started; at his school’s alumni party, the reception was hostile.

“I was introduced as a mad person to fellow alumni that were meeting me for the first time.”

Another introduced Kigozi to a girlfriend as someone who “should be at Butabika Mental Health hospital, and not an alumni party."

To this day, whenever Kigozi tries to joke or be humorous, he is quickly judged with “the madness is returning.”

The backlash he experiences has also come from dear ones. As a result, Kigozi does not tell the girls he dates about his condition unless it is a longterm relationship. Girls have ended relationships with him once they hear about his illness.

Even family largely stigmatizes him; only his father has been with him to Mulago. His other support system comes from his uncle, Paul Mukiibi. The stigma and discrimination Kigozi suffers has had profound effects on him.

“It makes me disempower myself, hate myself and have self-stigma. Sometimes I curse myself,” he says. “I feel hopeless in life and that leads me to thoughts of suicide.”

Kigozi’s is the story of many mental health sufferers in the country, the reason why many still go undiagnosed and untreated; even when one is successfully treated, the stigma never goes away.

The stigma faced by his nephew has driven Mukiibi to take up communal activism. “I sensitize people in the community. I teach them why it’s not good to call people with mental health challenges names,” he says. His activism has ironically brought upon him the very stigma he fights.

Dr Byama Mutamba, a consultant psychiatrist at Butabika Mental Health hospital, who is also the technical director at YouBelong Uganda, a mental health NGO, says stigma has been influenced by negative attitudes and misconceptions people have towards the mentally ill.

In Africa, societies are still largely influenced by mythological culture. Ideas that supernatural forces such as witchcraft, ancestral spirits and curses cause mental illness still remain popular, and patients often end up in shrines than in psychiatry hospitals.

Mutamba describes stigma as the biggest obstacle to mental health care and recovery, noting, “It prevents patients from living life to its potential, fitting into society and being treated just like any other person”.

A report by parliament’s committee on Mental Health in September 2018 stated that “the stigma surrounding mental health causes exclusion, discrimination and reduces access to care by those who need it most.”

But can this stigma influence the way mentally ill people perceive themselves? Yes, there is a correlation, says Mutamba.

“When the mentally ill are discriminated against, ostracized, denied their rights, and treated as less than human beings, it turns into self-stigma.”

And it is more important to deal with self-stigma because it is more debilitating. One starts to believe what the community says about him or her, and hates oneself for it.

“Given the appropriate treatment and care so that a person can be able to deal with self-stigma, it can carry that patient a long way (towards recovery), and when people see that someone has recovered, it can take away some of the stigma.”

Does Butabika compound stigma?

Butabika National Mental Health Referral hospital is the only purpose-built mental health facility in the country and is in a way a physical epitome of stigma.

Phrases such “butabika” are used to refer to mentally ill individuals implicitly and mental health facilities conjure feelings of dread among patients.It does not help that in Buganda, for example, Butabika seems to have been derived from the word “okutabuka”, which means to ‘become confused’, or to ‘lose it’.

Dr Mutamba agrees, the place where specialized help is found may have compounded stigma.

“It’s a challenge to work with, because anything affiliated to a mental health institution (draws) stigma. Even we as health workers are stigmatized by the public. They think we are also mentally ill.”

But once people get past that stigma, they are able to get the help they need. Butabika has also helped many young people overcome alcohol and drug addiction, known mental illnesses aside.

North Uganda

At Gulu Regional Referral hospital’s mental health wing, John-Paul Nyeko, Mental Health Uganda’s district team leader, says between 700 and 900 people seek mental health services each month.

That includes people from six surrounding districts as well as refugees from South Sudan. The brutal, 20-year LRA insurgence scarred a lot of minds in this region. Northern Uganda has the highest prevalence of mental illness in the country, as a result.

A study by the Germany-based agency VIVO in 2014, put Post Traumatic Stress Disorder (PTSD) – a mental illness due to failure to recover from witnessing or experiencing trauma – at 48 per cent among the population in Gulu and Amuria districts. This is followed by severe depression at 24 per cent and anxiety disorders at 24.

The North is also home to the strange nodding disease that has still baffled health caregivers. Non-governmental organizations such as Mental Health Uganda and others have been spearheading the fight against stigma through community awareness and sensitisation campaigns. They are supplemented by government, though not financially.

Dr Hafsa Lukwata is the in-charge of the Mental Health and Substance program at ministry of Health.

“In the proper definition of campaigns (the government) doesn’t have any campaigns (against mental health stigma), but we talk about awareness whenever we get an opportunity; we work (with mental health NGOs), we develop programs for them and guide them,” she says.

The organizations The Observer spoke to all complained of lack of resources to reinforce their anti-stigma and sensitisation campaigns, which they say is critical to changing societal attitudes.

Government over the years has allocated less than one per cent of the health budget to mental health, and the majority of that budget has gone to financing Butabika.

In Gulu, Nyeko says Mental Health Uganda has now trained Catholic priests in the diocese to talk about mental illness and stigma during sermons. Whereas their campaigns are having impact, a lot still needs to be done.

Dr Samuel Mugamba, a retired senior psychiatrist, now a senior lecturer at Mulago Health Tutors College, says, “The time is long overdue. We could have started sensitisation long ago.”

Stigma among health workers

While talking to mental health workers, the subject of other health workers stigmatizing mental health workers kept rearing its head. Mugamba says colleagues complain to him about it. He has seen and personally experienced stigma from the medical profession.

“There is what we call liaison psychiatry for disciplines like surgery, gynaecology and obstetrics, in which we were called to see mentally ill patients; many times during my visits there, I would find the mentally sick pushed into a corner, and the health workers would then tell me, ‘your patient is the one in the corner’. The patient was now mine instead of ‘ours’,” he says.

A report from the John Paul II Justice and Peace Centre in 2014, stated that many mental health workers in mental health centers including Butabika say there is “a prevalent belief that people working in the mental health sector have themselves mental health problems”.

“One respondent said that due to widespread stigma, many of her colleagues don’t choose this profession voluntarily but only if they have no other choice,” the report says in part.

The case for treatment within the community

The Mental Health Act 2014 states that health care workers should be available in health centers II, III and IV. Dr Mutamba says mental health care at community level would be less stigmatizing and has other benefits.

“If there is affordable, adequate treatment and care, someone starting to develop problems can be helped early and in addition, treatment within communities allows for quick recovery and getting back into society.”

That means many more mental health workers will be needed to fill the positions at the primary health centers.

In November last year, the executive director of Butabika hospital said the country needed more psychiatric officers at various levels to ease pressure on the national referral facility.

Stigma at work

Paul Kigozi declined to have his picture taken, because he was afraid he would be recognized by potential employers, jeopardizing his opportunity at getting a job. Several others already employed declined to talk to The Observer because they said they would be recognized and possibly relieved of their jobs or face stigma and discrimination from colleagues.

It only shows how firmly entrenched stigma is, even among educated people. The executive director, Mental Health Uganda, Derick Mbuga, says mentally ill people who are employed would rather protect their jobs.

“Many people, even in the informal sector will not disclose that they have mental illness because once they suffer a breakdown, what follows is employers sack such people.”

He said misconceptions that all mentally ill people are violent and destroy property, still persist. As a result, very few people with mental illness ever get employed, even in the informal sector.

However, the Mental Health Act 2014 defends employees with mental illness. Clause 38, subsection 3 prohibits employers from discriminating people because of their mental illness. However, it is unlikely to change attitudes soon.

For Kigozi, who works as a volunteer for a mental health peer support organization, life is looking up; he is almost completing his two-bedroom house, has found new friends where he volunteers, who he says understand him.

He plans to go to university and study psychology, then get a wife and have children.  And for those in the war against stigma, the fact that this year’s budget for health is virtually the same as last year’s, only brings cold comfort. The road ahead is as hard and challenging as ever.


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