When the Covid lockdown took a toll on Yodit Tesfaye and her friend, they turned to YouTube. Every Thursday, the pair shared their own mental health struggles and taught their audience about mental health issues.
That channel led Yodit to the Mental Health Service Users Association (MHSUA). “My advocacy journey started before I joined MHSUA. My friend and I tried to create awareness using our channel. Then we joined the Association after the President contacted us,” she recalled.
Her story reflects this year’s World Mental Health Day, marked on October 10. The theme, “Lived experiences heard: real voices, real change,” put the focus on people who have lived through mental health challenges, rather than on research and treatment alone.
Yodit explained the Association’s peer support groups were helpful. “We had peer support, which was empowering,” she said.
Her channel drew mixed reactions. Some viewers were encouraged by the testimonies, she said, while others felt sad about what they heard but did not recognize the gaps in care like including the experiences of those affected by mental health challenges.
Dr Yidnekab Tilahun, a medical doctor who now works in marketing and business strategy, argues that shared stories also improve medicine. “The treatments are updated based on lived experiences. They can move the science forward. The therapy will also be sharpened because of lived experiences,” she said.
Dr Yidnekab is passionate about mental health advocacy, and draws on her medical background and personal experiences to raise awareness and help break the stigma surrounding mental health.
She also described what telling her own story has meant to her. “Sharing my story helped me identify where I belong. My story will remain mine. And by telling my story I can be a voice for those in similar situations. Sharing your story is something that clears itself with time. There is no ready-made platform to share your lived experience.”
Leoul Mesfin, a legal professional and cofounder of the Alenlachehu Charitable Organization, which works on mental health awareness, said personal testimony changes how people engage in mental health discussions. “People participate more when lived experience is presented. We create an environment in which we can freely discuss,” he said.
What the experts say
For years, Psychiatry’s focus was on more research and better treatment methods. Recently, that has shifted toward hearing from patients and bringing them into the treatment process, said Dr Estifanos Endalamaw, a psychiatrist and Mental Health Director at Eka Kotebe Hospital. He called this year’s theme a significant step forward.
“This year’s main focus was on lived experience. It needs to be heard. This is important to bring change,” he said. “Mental health care has been provided for many years. It has developed over the years. The professionals shouldn’t be the only ones who decide. A peer support platform is also important. This can offer support on how they can be resilient.”
The World Health Organization describes October 10 as a chance to engage meaningfully with people with lived experience of mental health conditions and to treat their knowledge as a form of expertise. It says their voices should help shape the policies, services and decisions that affect them, and that doing so should make mental health systems more person-centered, rights-based and responsive.
The Ethiopian Psychiatric Association, through its President, Professor Atalay Alem, said it recognizes the invaluable knowledge and expertise of people with lived experience. Beyond being heard, it said, they must help shape policy, influence decisions, co-design services and advocate for their rights and dignity.
The legal framework
Ethiopia has already adopted the UN Convention on the Rights of Persons with Disabilities, which covers mental health conditions, Leoul said. It was ratified and made law in 2010.
In 2024, the Ministry of Health issued a new proclamation No. 1362, Leoul said. It has two parts, one on forensic mental health and one on how mental health care is provided. The proclamation defines mental health as a state of mental well-being that allows individuals to cope with life’s challenges, realize their potential, learn, and work properly. In addition to that, it states that health institutions are legally required to provide mental health services as part of standard health care delivery.
What comes next?
“Nothing about us without us” is the common motto when lived experience is discussed. As Ethiopia works to widen access to mental health care, advocates say the principle has to move from slogan to practice.
Leoul said his organization is trying to be a voice for people affected by mental health issues, “working to break the stigma and trying to create awareness.” Yodit said the MHSUA, which has existed for eight years and has been more active in the last four, has contributed to the national mental health strategic plan and to the psychology teaching curriculum.
In a panel discussion organized by Alenlachehu Charitable organization, Agitu Tadesse Beyene, Senior Expert in the National Mental Health Program at the Ministry of Health, stated that they are reviewing what the last strategy (2020-2025) achieved and what is still missing.
“The next plan is to include people with lived experience from the start for the preparation of the strategy,” she added.
At the Ministry, Agitu contributes to national mental health strategies and policies and to training manuals, and she works to bring mental health services into primary health care. She is also a member of the national MHPSS Technical Working Group.
“We want those people in the room when decisions are made. That means peer-led groups, family associations, and civil society partners helping shape policy, services, and review. We will keep strengthening those links,” she noted.
As Ethiopia strives to provide better access to mental health care, the importance of involving people with lived experience becomes important, and the responsible parties seem to have realized it that fact.
