Claudia Bustamante (28) discovered she had ovarian cancer in a way that she herself calls fortuitous. The warning sign was a pain in the lower abdomen that he felt at work and which, as the days went by, intensified. Somewhat worried, she went to the gynecologist and, after taking tests, they found a cyst that needed to be removed and investigated.

Without thinking too much about it, he underwent surgery as soon as possible, believing that his problem would be solved with this procedure. However, a few days later, with the biopsy results in hand, he immediately knew that this “It was a long time.” His diagnosis was stage 3 ovarian cancer. “I didn’t know anyone young that something like this had happened to. small operation and that was it, so I had no one to share or talk about the disease with more closely,” he says.

Looking for experiences before entering the chemotherapy process, Claudia came to Tik Tok from a 24-year-old girl with breast cancer. What he saw was all he didn’t want to hear at the time: “In his videos, everything was always going very badly. Obviously, I read scientific reports and data on cancer treatments, but I still needed to have that knowledge more than experience. And in these Tik Toks, she said that she hated chemo, that it was going very badly, drugged. Then I was terrified because before I obviously had preconceived ideas about what could happen, I even thought I was going to be bedridden,” she admits.

However, after six chemotherapy treatments she underwent at the Arturo López Pérez Foundation, Claudia began to realize that although the treatment was physically exhausting and there were complex moments in terms of symptoms, the process was not wasn’t as overwhelming as she imagined. That, even though he had certain limitations, he could go on with his life with relative normality. “I had five bad days, but the rest went well: I could do things, go out, interact, socialize. In fact, I was happy to go to chemo because the people were nice and because I knew it was a step forward for my improvement. Suddenly, I understood that the Tik Tok girl was not a reference, because her story did not resemble mine. The problem is that this discourse that associates fear with cancer is very widespread”.

And it is that when diagnosed with these characteristics, it is not strange that patients feel this type of emotion, explains the National Cancer Institute of the United States. Actually, the range and variety of reactions can be so wide, fluctuating and diverse that it is virtually impossible to encompass in a single response what a person may live. However, this way of approaching the disease, as stated by said entity, is not only determined by personal/family values ​​and experiences, but also by the social narratives that settle around the disease.

How do we talk about cancer socially? To what extent do these stories have an impact on the way of living and going through this disease? Are they paralyzing us? Do they mobilize us for medical visits?

The psycho-oncologist Daniela Rojas and specialist in scientific communication affirms that there are in general two deeply anchored paradoxical discourses around cancer. One that idealizes the disease, showing only “happy” patients, and another that appeals to fear, overdramatizing and using suffering as a communicative resource. “The problem is that when there is a lot of fear, resistance to the message is generated, i.e. people prefer not to go to the doctor or not to know if they have something thing,” he explains.

“And that is that if you present cancer as a brutal and uncontrollable enemy, the self-perceived efficacy against the problem is canceled and people do not feel capable of undergoing treatments. Thus, self-care behaviors are put at risk”, explains Daniela and adds: “In general, we talk about cancer as if it were a single pathology when in reality it is a set of more than 300 diseases with different characteristics and treatments. This leads people to include it in an identity, which results in phrases such as If I had cancer, I wouldn’t do anything to myself.“, noted.

Since cancer tends to have this type of association -unlike other chronic diseases-, explains Francisca Contreras of the Chilean Association of Oncological Groups; Fear not only leads to postponing preventive examinations, but also plays a role when making decisions in the treatment of the disease. “Naturally, many people come to see me to accompany and support the patient, and sometimes they are also in shock. With this, a range of alternatives opens up, whether it is a second opinion or complementary therapies, and this information can increase anxiety and uncertainty, generating doubts even in the treatment indicated by the medical team”.

That is why over time Claudia wanted to share part of her treatment on social networks. Her goal was to break stereotypes and share her experience in a friendly and close way with others. “I felt I had something to say, that although it’s a bit difficult, it’s bearable as long as there’s a good support group,” he says. So he started uploading content to his Tik Tok account @rapadagirl , where he has more than 35,000 subscribers to date. “Women from Mexico, Spain, Argentina, Uruguay, Costa Rica and many countries I never thought of have written to me. They said my videos had helped them not not go for treatment with so much fear”.

This is precisely the work that specialists indicate needs to be done in terms of communication. “It’s not about asking how people approach the disease, but the idea is that a warlike approach is not imposed on the part of the media and health professionals, because that has been the predominant discourse. over the past 50 years,” says Daniela Rojas.

The goal, says the specialist, is that, on a social level, we can talk about this disease with the complexity, depth and seriousness it deserves. “There has to be an approach that does not come from fear, but from the understanding that it is a complex pathology, but that it can be detected early in some cases and that there is tools in the health system that can facilitate its treatment. There is a lot to communicate so that people can make informed decisions and not based on stigma,” says Daniela, who is also a co-author of the book. Words that Care: ethical and empathetic social communication in oncology .

Francisca concludes something similar from the Chilean Association of Cancer Fighting Groups: “We must emphasize that cancer is not a battle and patients are not warriors or fighters. No one chooses to get sick and less losing the battle. no one dies from try less. Beyond the individual and subjective nature of the disease process, it is important to keep in mind that it does not depend on the patients and that they will surely do everything in their power to heal and get better. Who is valued, supported and respected”.