Lived Experience Voices: Every Story Deserves to be Heard
Lived Experience Voices
Every Story Deserves to be Heard
Diana Castillo, lived experience advocate
Diana, an advocate originally from Colombia, reflects on growing up with obesity, finding the care she needed, and why she now works to make sure people living with obesity are heard.
My name is Diana. I am Colombian, but I have lived in Italy for 18 years. I have been living with obesity since I was a child. At my heaviest, I weighed almost 140 kilos.
For many years, I thought the greatest weight I carried was the weight of my body. Today, I know that was not the case. Obesity closed many doors for me in life: at school, at work, in social relationships, and even when it came to accessing appropriate care. But the deepest pain began much earlier.
As a child, from the very person who should have loved me, protected me and made me feel safe - my mother - I experienced mistreatment and heard words that hurt me deeply. I was mocked because of my body and my obesity. I heard terrible things, things that no child should ever have to hear. Instead of feeling protected, I learned very early to feel that there was something wrong with me.
To feel different. To believe that my body was something I should be ashamed of. I was a child who needed love, warmth and security. And I looked for all of that in food. I ate in secret. I turned to food in search of the warmth and love I was missing, trying to fill a void that I did not even know how to describe. Food had become my refuge. I was not simply eating because I was hungry. Often, I ate because I needed to feel better.
For many years, no one saw this part of my story. People saw my body, but they did not see the pain behind it. They saw my weight, but they did not see the emptiness I was trying to fill. And as I grew older, that weight continued to follow me and close more doors.
At school, I felt different. My school uniform did not fit me properly, and during PE lessons I avoided wearing shorts. My thighs would rub against each other and become irritated, but more than anything, I did not want to show my body. I preferred to wear the sports trousers instead. I could feel my classmates looking at me, and I knew they saw me differently. And so, little by little, I learned to be ashamed of my body.
But other people's judgement did not stop at school. Once, when I was looking for a job in a shop selling cosmetics and personal-care products, I was told that I had a lovely face, but that I did not fit the image they were looking for. I was also told that they did not have uniforms in my size. On another occasion, when I applied for a job as a dishwasher, I was told that my body size could be a problem in a small kitchen because it might restrict other people's movement.
Those experiences made me realise just how much obesity could affect a person's life far beyond their health. It closed doors for me. It made me feel excluded. It made me feel that my body was not acceptable.
And then came an even greater pain: obesity was beginning to take important moments away from me with my son. I could not run with him. I could not teach him how to ride a bicycle. At the park, I often had to remain seated while he ran around and played. I would watch him and wish I could run with him. I wanted to experience those moments as a mother, without my body preventing me from doing so.
For years, I asked for help. And for years, I kept hearing the same things: “Eat less.” “Move more.” “You simply need to lose weight.”
Every pain, every symptom and every health problem seemed to be attributed to my weight. The answer was always the same: lose weight. But no one seemed to ask what was behind my obesity.
No one seemed to truly listen to my story.
Until, almost by chance, I found an online forum where people living with obesity shared their experiences. For the first time, I felt understood. For the first time, I thought:
“I am not the only one.”
I started reading their stories and sharing my own. Thanks to those people, I discovered that there were specialist centres dedicated to the treatment of obesity. I entrusted myself to a multidisciplinary team.
For the first time, I felt that someone was seeing me as a person, and not simply as a number on a scale. The journey I began, together with bariatric surgery and subsequent multidisciplinary follow-up, allowed me to take my life back.
It has now been 14 years since my surgery. I have regained my health and mobility. I was able to run with my son. I was able to teach him how to ride a bicycle. I was able to take care of myself and my body. But above all, I learned something fundamental: obesity was not my choice.
It was not my fault. It was not a lack of willpower. It was a disease that needed to be understood and treated.
I continued to take part in the forum that had been so important to me. Over time, it became a patient association for people living with obesity, and I began volunteering.
There I met wonderful people. People with whom I shared stories, difficulties, fears and hopes. People who, through their experiences, taught me so much and made me feel an even stronger desire to give a voice to those living with obesity.
And I realised that their stories and my story could become something more. They could become a voice. A voice calling for obesity to be recognised for what it is: a chronic, complex, multifactorial and progressive disease.
The Italian organisation became much more than a place where I volunteered. It became an important part of my journey and of my growth as a person and as a patient. Together, we worked to defend the rights of people living with obesity, to promote recognition of obesity as a chronic disease, and to ensure appropriate, equitable and dignified access to care. We fought against stigma and prejudice. We advocated for multidisciplinary care based on scientific evidence. We worked to ensure that patients' voices were heard and that people living with obesity were involved in decisions concerning their health.
The European Coalition for People Living with Obesity
After many years of working with the Italian organisation, I discovered ECPO – the European Coalition for People Living with Obesity. And when I got to know ECPO, I recognised the same values and the same mission that I had already learned to defend in Italy. At European level too, ECPO works to give a voice to people living with obesity, combat stigma and discrimination, promote recognition of obesity as a chronic disease, and contribute to improving access to appropriate, dignified and equitable care.
ECPO also works with important European and international organisations, including the World Obesity Federation (WOF) and the European Association for the Study of Obesity (EASO), to raise awareness of obesity and contribute to the development of more effective and inclusive public health policies.
Create a stronger collective voice
It also collaborates with other European organisations and with organisations in different regions of the world, building bridges with patient organisations representing people living with other chronic diseases that are often interconnected, such as cardiovascular, kidney and liver diseases, and diabetes. Because chronic diseases do not exist in separate compartments. A person can live with several conditions at the same time and needs a healthcare system that sees the person in all their complexity, rather than looking at one disease at a time. That is why collaboration between different patient communities is so important: to create a stronger collective voice and call for health policies that are more integrated, more equitable and closer to people's real lives.
Patients must be at the centre of decisions about their health
For me, there is one fundamental principle: patients must be at the centre of decisions about their health. They must be heard. They must be involved in research into treatments. They must have a voice when health policies are developed. They must be able to participate in decisions that shape the future of healthcare. Because no one knows better than a person living with a disease what it means to face it every single day.
The patient experience is not simply a testimony. It is knowledge. It is a resource. It is part of the solution. That is why I deeply believe in the power of bringing patients' voices together, across Europe and around the world. Because behind every statistic there are people. There are stories. There are families. There are dreams, difficulties and lives that deserve to be lived to the fullest.
For many years, I was afraid to talk about my story. Today, I speak about it openly. Not because obesity defines who I am. But because I know that somewhere, there may be someone going through what I went through. Someone who feels guilty. Someone who thinks they do not have enough willpower. Someone who has asked for help and received nothing but judgement. To that person, I want to say: You are not alone.
Obesity is a chronic, complex, multifactorial and progressive disease
Obesity is a chronic, complex, multifactorial and progressive disease. And it must be treated as a disease: with expertise, with science, with a multidisciplinary approach, and by putting the person at the centre. We need personalised care, based on scientific evidence and accessible to everyone, regardless of their financial or social circumstances. Because health cannot be a privilege. We must stop judging bodies and start listening to people. Obesity does not define who I am. But the way we choose to treat people living with obesity says a great deal about the kind of society we want to be.
For many years, I was afraid to talk about my story. Today, I choose to do so. To transform shame into awareness. Pain into commitment. My experience into a voice. A voice for those who are still unable to speak. A voice for those who have not yet found the care they need. A voice for those who have been judged before they were ever heard. Less stigma. More science. More empathy. More access. More dignity.
It is time to change the way we talk about obesity. It is time to listen to people. Because behind every body there is a story. And every story deserves to be heard.
Blog by Diana Castillo, lived experience advocate
Lived experience voices
Lived Experience Voices is World Obesity Federation's series sharing first-hand stories from people living with obesity around the world, in their own words. Have a story you'd like to share? We'd love to hear from you - get in touch with our Communications team.
Contact us