Treat mental health as seriously as physical heath: interview with Inês Mália Sarmento, youth activist

Inês Mália Sarmento, a young mental health and disability activist from Portugal, has turned her personal struggles into a powerful force for change. At just 14 years of age, Inês found herself battling physical and mental health issues with little support from the system. Determined to understand what was going on, she embarked on a journey of self-education and gradually started filling in the information gaps for her peers.

Her activism, which began in earnest during the COVID-19 pandemic, spans multiple areas including chronic illness, disability and mental health. As a member of the WHO/Europe Youth4Health network and the Pan-European Mental Health Coalition, Inês made it her mission to advocate for improved services and youth participation. We spoke with her about the power of lived experience in driving meaningful change in health-care systems.

WHO/Europe: Inês, could you tell us about your journey?

Inês: Before I was even 14, I felt very helpless because the school didn't notice my peers struggling with mental health and the adults weren't doing anything to improve the situation. At 14 years old, I started experiencing symptoms of depression due to my physical health condition. It was all very confusing as I didn't have any information about it.

It was only later, when I was about 16, that I started to understand what was happening. However, I wouldn't receive any support from the school or from doctors even when I reached out to them. I heard a lot of comments like, "She just needs to get over it. She's just a teenager. It will pass!" or "She's faking it for attention", because that was a very common thing to tell teenage girls, which made the whole experience even worse.

I've always read a lot. When the COVID-19 pandemic hit in 2020, I was very angry that people were not using masks despite WHO's guidelines and decided to create a blog to spread fact-based information. There, I would also share how chronic illness made me disabled and how I would live my life and the challenges I would face every day. COVID-19 was just another thing on top that made disabled [people's] lives more difficult because I would still have to go to doctors' appointments.

There was a big gap before I started to raise awareness and work with other organizations to bring change. I became more vocal about mental health when I received my other diagnoses [edit: Inês has autism and dissociative identity disorder, which were diagnosed in 2019 and 2022].

WHO/Europe: What do you think prioritizing mental health really means? What's the urgency behind it?

Inês: During the pandemic a lot of people who were not disabled and didn't have chronic illnesses or mental health struggles, were experiencing a little bit of what people with disability, chronic illness and mental health struggles have been going through for years of their life. I'm talking about this isolation that can increase mental health struggles, especially depression.

One of the things about prioritizing mental health is making sure that digital ways to stay connected don't fade away with the pandemic. It is very important to have a community that surrounds you in person, but for those who are not able to have that, the digital format is a working alternative.

Prioritizing mental health means including people with lived experience in making decisions, giving feedback on those decisions, changing policies and creating and improving processes in this area. To make this participation meaningful, we must be involved from the beginning till the end and be able to understand what our impact is.

It is essential to remember that prioritizing mental health is not just one action, it is an ongoing process. It also means bringing awareness and education to schools, because change really lies in education about the right principles of mental health care and support, its different types and practices.

WHO/Europe: What will happen if people that make decisions on different levels of our society fail to understand that mental health is important?

Inês: It's going to be a very dark world. I haven't met a single individual who hasn't struggled with mental health at some point. The struggles we go through in our adolescent years shape who we are. If you're constantly living in a cloudy mindset, the only colour you see is grey. How are you going to be able to live your life in a way that brings you fulfilment? For a long time, this darkness was all I knew.

With support, I started to understand how I could cope with it, to live on and still be able to experience more positive emotions. If our leaders and governments fail to see this, I think we're just creating a population that is traumatized, doesn't know what happiness is and is missing out on the good bits of life.

WHO/Europe: What would be different if mental health were treated equally as physical health?

Inês: You would probably hear less people telling each other to get over anxiety and depression and see less people going to the emergency room for a mental health crisis. In-patient support and therapy would be more normalized. Mental health research would be taken more seriously, and mental health initiatives would have more funding. Health professionals outside of the mental health sector would maybe start receiving at least basic training in mental health and would know when to refer their patients to mental health specialists.

There would probably be more mental health support and awareness in schools, and going to a psychologist would be as normal as going to your family doctor. Bullying would also be taken seriously, and there would be processes in place to stop the situation. For example, in the school where I studied there was only one psychologist for 1400-1600 students from 5th grade to 12th grade, and I still wonder how that is possible. Confidentiality was not a thing - and my peers just chose not to seek support because in our minds, it would just make it worse.

WHO/Europe: What are the key actions that should be taken on a community level to better support young people's mental health?

Inês: For me it goes back to education. When a person gets pregnant, they go to birth classes, right? They want to understand what is going on in their bodies and how to take care of a child. I would love to see that with mental health - starting with parents asking themselves how they can support their child's mental health during adolescence and transition to adulthood.

We shouldn't have to wait till someone has mental health struggles and illnesses or disorders to start supporting them. We should be focusing on preventative medicine instead of just trying to fix things that are broken.

WHO/Europe: And what about schools?

Inês: This is a logical next step. It's about promoting understanding among teachers that they should not be labelling kids or treating them differently - they should just be there for their students. I would also love to see education in stress management in schools. A great deal of pressure is put on young people to succeed, and we measure our success by comparing ourselves to our peers. Sometimes we teach ourselves that seeking support is not the best thing because we hear so many stories where that went wrong.

I have experience of both cyberbullying and bullying in school. I was often targeted because of my health condition. One of my symptoms was fainting a lot and having seizures. The kids at school would just make fun of it. Unfortunately, my school didn't support me in this regard when I sought help, and my parents couldn't really do anything about it because if the school didn't intervene, what could they do, right? That's why the development of coping mechanisms was crucial for me in all these years struggling with my symptoms.

WHO/Europe: If you had just 1 minute for an elevator pitch to address the minister of health of your country, or even ministers of health in the European Region, what would you say?

Inês: If I had a chance to meet the minister once again, I would tell him that something needed to be done not just for mental health, but for the physical health of our population; that decision-makers need to listen to people with lived experience. I would tell him to pay attention to what's happening in the field. For instance, there are not just families and patients, but also health professionals who are dealing with mental health problems. Many of them are suffering from PTSD [post-traumatic stress disorder] after COVID-19. In my view, all of us need to sit down, discuss these issues and come up with concrete actionable steps to create sustainable change, because just talking about it is not going to fix it. But it has to start there.

WHO/Europe: Are there any positive breakthroughs in the field of mental health in your view?

Inês: For sure. I think it's the first time that WHO is putting so much effort into mental health, so that young people can really look at something and say, "They're doing something right". These networks, including Youth4Health and the Pan-European Mental Health Coalition, have a very big impact because all of a sudden you have a community in this space where you can actually contribute to something, even if it's as little as filling in a form.

This also bridges the gap between people with lived experience and those that would like to get involved in this field but have no idea where to start. For a long time, it would be an "us versus them" dynamic just because we have been failed so many times and had no trust. But we're reaching a point where lived experience is being valued as it should be. I think we're doing very pioneering work in this area, and it's not just refreshing. In the community, I would often hear people say, "If you're speaking about what we're going through here, there is hope".

WHO/Europe: What do you think needs to change to bring perspectives of young people from diverse backgrounds to the table in the world of international health forums and decision-making? How do we make this strategic and long-term?

Inês: Beyond education, the next step is access and accessibility, not just in terms of physical accessibility like ramps, which is the first thing people would think about. It goes beyond that - for example, to accessible language. Many documents written by international organizations, including WHO, are not accessible to someone not versed in how things are worded in this area.

Then, it's making sure that youth participation is meaningful by communicating to young people what their feedback brought and what the impact was.

It is also about people with lived experience training the organizations that are keen to implement activities in this field. For example, together with my young colleagues and WHO we co-created a document "Youth engaged for mental health". It's a framework with recommendations for how the Pan-European Mental Health Coalition can collaborate with young people in a meaningful and sustainable way.

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