My name is Grace Gatera. I am 27 years old. In those years, I have attempted suicide twice, and have had countless episodes of panic disorder, I have been depressed, I have had PTSD triggers and I experience anxiety almost daily.
Lady Fear sits on my shoulder like a companion, pointing out random things for me to be terrified of; over the years, these have included phone calls, taxis, visiting people, eating, not eating, wooden floors, certain really safe parts of my house, the dark, light, music, books, and endings. Oh, and Freddie Krueger (but this is very justified.)
The older I grow the more I can curb these urges, to contain my fear. I used to have panic attacks regularly, but now I have them once in a blue moon. I no longer get PTSD triggers regarding the genocide against the Tutsi, but now I get them for sexual abuse. Yes, that happened to me too. In recent times, these too had subsided, from full on shut-downs to tangy metallic aftertastes in my mouth, but recently the pandemic happened.
Growing up with mental illness is quite the experience because there exists a distinction between you and everyone else. You know even as a child that there are some experiences prohibited for you. For me, it ranged from small things like never watching any movies that had violence of any kind in them, which of course negated even some cartoons, to knowing that you are causing a commotion and being desperately embarrassed and deeply resentful of the person you are.
I cannot breathe in fully because our school nurse broke a bone in my rib cage giving me CPR during a panic attack. I cannot sleep without some form of light because I experience visuals of suffocation.
I am overweight, a physical reminder of my coping mechanism consuming my life after sexual abuse.
I am also an activist. Actually, I would rephrase that to say that I am a lived experience mental health advocate. Which means that I use whatever means necessary to advocate for affordable and accessible mental health care for specifically young women and girls in low and middle-income countries.
In my country, I am a youth division lead for Yego Rwanda, an NGO dedicated to the mental health of genocide survivors and the families of perpetrators. I concurrently serve as a young leader on the youth campaign for the Lancet Commission on Global Mental Health and Sustainable Development. I also work with the Wellcome Trust as a youth advisor. All these roles are geared towards disseminating a clear and simple message, that the mental health crisis that young people are facing right now is important, and it is important that the people in positions of power, nationally or globally should focus dedicated energy and resources to address it.
These roles to me would mean nothing if they did not stand for a complete and thorough revolution in the way mental health care for young people is viewed. I am lucky that the organizations I have mentioned above champion these causes. To me, an acceptable outcome from all this work is that specialized mental health care is made accessible to all young people, regardless of geographical location, race, and creed.
I have lived on the extreme end of not receiving mental health care, both clinically and socially, and I do not want anyone, especially little queer black girls like me, to ever go through what I went through growing up.
I believe in affordable, accessible and specialized mental health care for all, but specifically for poor black Africans in sub-Saharan Africa.
I have dedicated my life to the pursuit of this goal.
Lived experience like mine informs my every goal, my every move, and I know this to be true for other activists like me, and that is why we should be at the forefront of the movement for mental health.
When you read up on how mental health care has been transformed in the space of a few years, to move from punitive restriction (asylums and inappropriately administered shock based therapy) to recovery-based care, one has to marvel at how many people have worked in the shadows to make this accessible. How many lived experience activists have given their lives, and yet it is still not enough.
Mental health research and care is still incredibly western-centric. This is to be expected, western countries have more resources to spend on the improvement of mental health care. However, there has to be a time to shift energies to equip younger, less resourced nations to handle this growing epidemic.
This must start with a shift also in thinking. Racism still informs the world’s perspective on under resourced nations, and, for many, countries like mine, Rwanda, is still just a vague picture of savages, with dirty snotty nosed children with flies on their eyes, or statistics, numbers of poor and diseased.
We are still dealing with pandemics like malaria, HIV/AIDs and malnutrition, not to mention with war and political instability, so there is no need to think about mental health care for us, yet. Right?
No! We are people too, we deserve the same kind of care, or even more specialized care for the centuries of harm our countries have been forced to endure. The voices of young people (or relatively young like me) are speaking up now, more than ever to demand change, to demand a revolution in thinking.
Maybe in the next century, people like me will not have to suffer through broken ribcages and near deaths to finally receive the care they so richly deserve.
It is time.
It is past time, actually.
NOTE FROM THE EDITORS: Grace is a lived experience, youth mental health advocate, living in Kigali, Rwanda. She serves as a Strategic Advisory Board Member for the Wellcome Trust, and is a young leader for My Mind Our Humanity, a youth campaign for the Lancet Commission on Global Mental Health and Sustainable Development. Grace truly is an inspiring young woman and we would like to take a moment to thank Grace for taking the time to share this powerful piece with us. Thank you, Grace — we look forward to seeing what’s next!