This woman is fighting to end stigma around mental health in Uganda

Liz Kakooza hopes her seven-year-old daughter will grow up in a country where there’s no stigma around mental health.

“She’s starting to understand some of my struggles,” says Kakooza, who lives in Kampala, Uganda and runs The Tumaini Foundation, which aims to raise awareness of mental health and create safe spaces for people to talk.

She was diagnosed with depression in 2015 – more than a decade after it was triggered by trauma, which left her dealing with suicidal thoughts and painful symptoms through her teenage years.

“I couldn’t get out of bed some days, there was this feeling of extreme sadness, that just doesn't go away,” she says.

“I dealt with a lot of things growing up. I know they affected me for a very long time and I've had to work with a therapist to work through those.

“I put on a lot of weight, I lost interest in things that used to excite me and I had no hope. My teachers used to say I was brilliant and intelligent, but it was so difficult getting through school.”

Misdiagnosis

The depression also manifested in physical symptoms like joint pain, so, for years, Kakooza was misdiagnosed by healthcare professionals, who told her it was arthritis “and a bunch of other diseases that were really just a manifestation of the depression I was dealing with”.

She believes in Uganda most of the stigma around mental health comes from the healthcare providers: “They’re not very honest with patients. They’d rather give a different diagnosis instead of suggesting you check in with a psychiatrist or consider looking into a mental health issue.”

After doing her own research through “Google University”, Kakooza talked to her family and decided to see a psychiatrist to make sense of her symptoms. Fortunately, her mother was supportive while other people around her still see it as taboo.

The lucky ones

With the help of health insurance for her job, Kakooza paid to see a psychiatrist, who diagnosed her with depression and tried her on different types of medication, eventually finding one that has eased her symptoms.

Even though it took 15 years to get help, she still believes she’s more fortunate than others in Uganda who can’t afford the care they need. Just 1% of government healthcare expenditure is directed towards mental health in the country, according to the World Health Organization (WHO).

In 2016, the WHO found there were just 0.09 beds for mental health in general hospitals per 100,000 population in Uganda, compared to 11.1 in the US.

It’s this lack of resources and funding, combined with her own experiences, that spurred Kakooza on to co-found The Tumaini Foundation – which means “hope” in Swahili.

“No one should have to suffer the way I did for that length of time, before you even consider seeing a psychiatrist,” she says.

“I see a therapist and do cognitive behavioural therapy, which helps me to cope, but opening up about my journey and working to create awareness is very therapeutic.”

Taking action

Along with a network of psychiatrists, Kakooza, who’s just finished her term as the curator of the World Economic Forum’s Kampala Hub, does mental health advocacy and runs sessions for women in safe spaces to open up about their struggles. She offers pro bono workshops for organizations and gathers data around those working in mental health to enable collaborations.

In future, she hopes to survey young people to learn more about Uganda’s mental health landscape, open a rehabilitation centre, set up a suicide counselling hotline and work with the army.

“We’ve started discussions with a few generals who have really taken a keen interest, some of them have shared their personal struggles dealing with addiction and mental ill health.

“There's a lot of politics that goes into working with the army here and navigating that bureaucracy is a challenge. But we're hoping for the best.”

She also wants to go into schools and talk about how bullying can affect the mental well-being of children.

“It has a major impact on how they view themselves as they grow,” she says, revealing that her daughter has been a victim of bullying.

“It’s quite the task sitting down with her to reassure and reaffirm her. And I keep thinking there are probably young kids out there whose parents don't even have the time to do that.”

Funding gap

All these plans need funds and Kakooza is aware that the donations she receives from family and friends aren’t enough to make them happen.

“But the work has had to start to just get the message out there, to get people to open their eyes and minds and normalize the conversation around mental health.”

Mental health affects an estimated 1.1 billion globally, but 80% of those with mental health disorders live in low and middle-income countries like Uganda. By 2050, the prevalence of mental health conditions in sub-Saharan Africa could increase by 130%.

Studies show that three-quarters of mental health disorders begin before the age of 24 – which accounts for an estimated 80% of the Ugandan population.

“We need to get people that control big budgets – governments and development partners – to really understand mental health is not a far-fetched concept; it’s actually a crisis. And a growing crisis, especially here in the African continent with such a young population,” says Kakooza.

“Because it's a non-communicable disease, it’s not considered high priority like malaria, tuberculosis, and HIV. But it goes hand in hand with these diseases.

“People living with HIV and Aids need a lot of support with mental health issues. It's not enough just to give them the pills they need. Yes they’re life-saving, but for them to thrive and live full lives, they still need mental health care.

“Getting the health sector to understand that and changing those perspectives is very, very important.”