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Why Lived Experience Matters: Advice from Expert Grace Gatera

This week we hear from Grace Gatera, a mental health and NCDs lived experience advocate, living in Kigali, Rwanda on Why Lived Experience matters when it comes to mental health welfare during the covid-19 pandemic. Grace is a commissioner on the Lancet Commission on Gender Based Violence and the Maltreatment of Young people. She is an NCD Child young leader as well as a youth leader for the My Mind Our Humanity campaign for the Lancet Commission on Global Mental Health and Sustainable Development. She is an advisor on the COVID-MINDS network international steering group.

My name is Grace Gatera. I am a lived experience mental health activist/advocate. I am 27 years old, and I live with several mental health illnesses. When I say lived experience, I understand that it has many varied meanings depending on the context, so I am talking about it within the very specific context of mental health work/advocacy.   In this space, I am talking about people with a personal experience of mental illness, service use and recovery participating in the design and delivery of mental health services. This is important to hold on to, that lived experience also includes knowledge garnered. For a lot of people, their true expertise comes from their lived experience, and this exchanging of lived experience can bond us together in the world.

My lived experience is vast and varied, I have the lived experience of living with mental illness, but also as a black person living with mental illness, and, bear with me, a black African person and, bear with me even more, a black African woman and genocide survivor living with mental illness. These intersections are important to me because they represent the different times in my life I have been confronted with realities that may not have occurred to me if certain parts of my identity were different. And that is where lived experience is crucial to shaping activism/advocacy, because one brings these different identities, experiences and outlooks to the fight for better.

While there was evidence of the spread of Covid-19 in December 2019 in Asia, it was only declared a global pandemic in February 2020, but as countries went into lockdown to try to contain the situation, there was a documented spike in people’s anxiety levels. A guardian article talks about how people with no history of mental illness in the UK were suddenly developing serious psychological problems for the first time as a result of the lockdown, amid growing stresses over isolation, job insecurity, relationship breakdown and bereavement. One colleague told me that they now routinely washed their hands every few minutes and they had trouble sleeping at night due to the overwhelming anxiety they felt. The same article speaks about the exacerbation of existing mental health problems. Personally, this has been one of the most challenging times I have gone through. As a person with panic disorder who experiences an unusual amount of anxiety even during normal times, I have experienced a couple of panic attacks, one of which happened last night, where my mother had to sit with me all night because I was hyperventilating.  

There have been multitudes of research studies launched to try and make sense of the

psychological impact of the global pandemic. Social media has filled with surveys, and questionnaires as researchers around the world have started collaborating to get ahead of what is predicted as a “Tsunami” of mental health problems arising from the Covid-19 era. Those studies tracking changes longitudinally in mental health have been brought together in the COVID-MINDS Network database. The efforts that have been made, and the coalitions formed to ensure that we understand what is coming is admirable, but it leaves us with one question: Where are the lived experience voices?

While there have been rising efforts to incorporate lived experience voices in ongoing studies, with support from the WHO, there is a conspicuous absence of lived experience professionals co-leading or advising on research around mental health during the Covid-19 era. This is a severely missed opportunity to draw from the vast wealth of experience and expertise of lived experience. Inclusion means not only using lived experience as the subjects of studies, but having them as co-authors, as advisors. Apart from the obvious and aforementioned wealth of information and expertise that they would bring to these roles, people with lived experience would understand probably even more than psychologists or psychiatrists the viewpoint of the study subjects, providing invaluable input on how to properly conduct a study without compromising or alienating the participants. Often questions in studies, while important, can be intrusive or insensitive and may cause distress to the people answering them. Having a lived experience professional on your team could help ensure that this does not happen and they could help shape your work to become more empathetic and participant friendly. Lived experience professionals also bring perspectives to studies that may be ill- or not- explored at all. Besides, the inclusion of lived experience signals that our voices are equal, that our perspectives are valued, and promotes hope that there is a future for people like us in the movement to make mental health service delivery more accessible and affordable for all.

Traditional research has not provided a space for the inclusion of diverse lived experience perspectives and to be able to be a part of a powerful movement like the COVID-MINDS networks is something I would never have envisioned five years, nay, even a year ago. In the auspices of a social movement sweeping the world, it is important to research and researchers alike to remember that lived experience is crucial for the success of a study.

So how can you include lived experience in your study? Even if you have not yet involved lived experience, it is not too late. In fact, it is more important than ever that you reach out and broaden your team to include people with lived experience. I have five suggestions.


Invite them

Restructure your call for applications to prioritise those with lived experience 02/ Use your networks There is always someone who knows someone with lived experience. 03/ If it does not exist, please create it If currently your study has not created a space or role with lived experience in mind, you can do so now. You could even add them as a paid consultant if the permanent roles have already been taken up. 04/ Use local professionals There is no reason why someone from the western hemisphere should advise on mental health within other contexts and vice versa without putting local voices at the forefront. Using local voices expands and adds varied perspectives which richly enhances your work. 05/ Respect lived experience perspectives It is not enough that you should include them, but incorporating their input should be an essential part of your commitments. We are not only our stories, we are experts and we deserve the respect that goes with it.

A small caveat: much like black and POC activists ask for people to avoid tokenism, there should not be tokenism in lived experience inclusion. One perspective does not stand for all, and even in lived experience, there is the existence of privilege. So, when including lived experience, be mindful of looking beyond just lived experience into seeing how diverse voices are being promoted in your work. We stand on the precipice of change, and this is the chance to revolutionise mental health research by including long ignored voices. I encourage you to take the plunge.


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