The history of cancer has emerged from consultations and the privacy of homes. On social networks, patients undergoing treatment talk about their experiences with the disease, comment on their day-to-day lives, and exchange experiences with other patients. The suffering is verbalized and there are personal stories that attract thousands of followers and support. The Instagram account of Elena Huelva, a 20-year-old girl who recounted her life with Ewing’s sarcoma, reached one million followers and her death on January 3 transformed her motto (“My Wishes Win”) into her motto trending topic on Twitter with messages of support and affection for the young woman and her family. Hilda Silverio’s newspaper, who has suffered from breast cancer since 2014, also has more than 300,000 followers, although in these weeks her family has seen the most bitter face of the networks, denouncing cases of harassment of women. Experts highlight the benefits of making the disease visible, but also warn of the risks of telling about cancer in the networks: the patient may lose control of their public exposure and other sick viewers may become frustrated with someone else’s story.
Sara Cervelló is not a big fan of telling stories about her life on the internet. In any case, she uses them to publicize cancer research and she attends round tables with experts to speak out as a cancer patient: she is 40 years old and at 37 she was diagnosed with a breast tumor with bone metastases. “Each patient faces the disease as he knows how, as he can or as he wants. I use the networks to disseminate research results, but I don’t have to reveal my day to day and generate content, ”she explains.
He also follows some patient accounts, not many: “I follow some but not actively because I don’t want to open Instagram and see patients sharing their day to day with cancer because I already have mine,” he admits. However, he sticks to the positive side of other patients’ stories: revealing a reality he shares. “It shows the harsh reality that, for example, breast cancer is not pink. And when I see accounts like this, I feel like I’m not alone. It is important to show the human side, that we are not just a number, ”she defended. But also assume that this exposure carries risks, e.g. B. Losing control of that account or being forced to say what he doesn’t want to say due to outside pressure: “This is not Netflix, one episode a week. That person should be able to decide what to explain, when to explain it, and whether to stop.”
The word about cancer has been raised for a long time. Anonymous or famous people. From Rocío Jurado in a big press conference in 2004, where she announced that she had a pancreatic tumor, to the singer Pau Donés, who always spoke openly, and the journalist Jordi Évole, shortly before his death in 2020, including a last interview. granted. Likewise, Angelina Jolie’s announcement that she had undergone a double mastectomy as a preventive measure due to her high risk of cancer helped “make visible a reality that exists,” says Sonia Pernas, an oncologist at the Catalan Institute of Oncology (ICO). ). With the advent of social networks, this speaker has evolved and anonymous patients such as Huelva, Siverio or young Charlie, a tiktoker from Alicante who also died of Ewing’s sarcoma last summer, have taken the floor to tell not only the diagnosis, but also also his life. with the disease
The experts surveyed praised the positive effect of reporting cancer in the networks and making the disease visible. According to Pernas, it can serve to “demystify” the disease: “Making all this visible is good and can help other patients to demystify it when they see everyday life. But it should be understood that everyone’s experience is different. Each patient is a world. There are many types of tumors and they all react differently, ”she warns.
Paco Gil, head of psycho-oncology at ICO, assures that the use of social networks is “a resource that people value”: “The most important thing about the social network is the attitude with which the disease is faced. People feel validated. But it is important that there is truth, that a false illusion is not created either ”. No two patients are the same, and their ways of dealing with the disease differ, experts insist: some are right to tell the world, others the opposite.
There is no single way to live with cancer, and none is bad or wrong, warns Tania Estapé, president of the Spanish Association of Psycho-oncology: “Whoever does it gives free rein, feels company, needs it to take it to the outside world.” . But be careful, the most exposed may not be the one who manages the best or the one who best psychologically adapts to the disease. Sometimes the people who show up do it to calm their fears.
The “trap” of positivism
In one of her latest posts on Instagram, Hilda Siverio, from the hospital, pretends to sing a song with her daughter, under a letter that says: “We continue with hope, fighting with joy.” , can “do good” for many patients, but Estapé, on the other hand, warns of the “positive thinking trap” and the frustration of sick viewers who do not reach the attitude of the patient who tells his life on networks: “You can have the feeling that you are not doing well if you do not smile. That I’m doing something wrong when I’m not sure. But it is logical in this process to have a bad time. You have to keep in mind that in the networks you see what the other person wants you to see. One of my jobs is to explain that there is nothing sad or angry in life,” says the psycho-oncologist.
The experts emphasize that cancer “has a sociological component that evolves over time” and that, Estapé emphasizes, the networks “are embedded in daily life.” Especially with the little ones, like Elena. But they remember that space must be left for each patient to deal with the disease as they want: “It seems that it is obligatory to explain it, that if you don’t say it, you don’t accept it. But each one has to do what is convenient for them”, says Estapé. Cervelló, for example, admits that it took him a year to make his illness public: «It is not my thing to generate content. My time is very limited and I prefer to dedicate myself to other things. Seeing others carry it with more strength or resilience does not mean that you carry it badly. For me, for example, cancer has nothing positive and has taught me nothing.
Another sensitive issue, according to those surveyed, is the impact that the death of a patient has on loved ones. “In the women’s group I work with, this message reaches all of us and we share it and discuss it. They have a negative effect on a personal level and on the group of patients. It depends a lot on how you face life, illness and death”, says Cervelló.
Estapé admits that after the death of a patient who recounted his life on networks, “a cascade of depressed or anxious patients” is seen and that the news of the death of a famous person is “a trigger for the fear of relapse.” With the death of Pau Donés, the psycho-oncologist recalls the feeling of some of her patients, “the resignation, that feeling that whatever you do, nothing will go well.” Gil agrees that, in his opinion, death is a familiar person has no lasting psychological effects but triggers an episode of “emotionality” and some patients cry and express their emotions during counselling, for example.
Threats and deception
In any case, Sonia Pernas advocates “responsibility” when sharing content about cancer on social networks. Responsibility with the information disseminated and the exposure itself. “I would advise if it is done, which is fine, to have the support of the oncologist who is treating you, who is aware of the negative and positive effects it can have.” scientifically verified. “Patients are better informed and empowered, but be careful where you get your information from so you don’t create false expectations or say things that aren’t true.”
Health hoaxes continue to abound on the networks, and the population affected by a tumor is at risk. Cervelló insists on the “importance of responsible dissemination of information.” “There are many of us who are watching, the situation is very dramatic and you are grasping a burning nail. The ease with which people recommend things without scientific backing is brutal, ”he laments.
You will not be cured if you are positive or a good person, dismantles Estapé: “There is a harmful influence. Patients come and say: ‘Because they told me that if I am not positive, I will not be cured.’ But there is no evidence of that. It is true that people with a mild depressive disposition tend to take less care of themselves, to get carried away and to undergo fewer check-ups, but it is a very easy association”, he qualifies. And she gives another example: “I remember very well the case of Rocío Jurado, the news on TV saying that she would be cured because she was strong, good and brave. But you have to be careful with those words, because in cancer there is always an element of chance: there are strong, good and brave people who are not cured”.
As in the case of Hilda, the other great risk of exposure in networks is the harassment that patients may suffer. Or their families. In her case, Siverio’s daughter denounced “threats”, “disrespect” and demands from supporters who wanted to know the state of her mother’s health. At that moment, when she was considering how she would use her illness in the networks, Cervelló was already weighing these risks: “And I asked myself: what good is it for you? Will it make it all up to you? The risk is that you have no control and you may end up being forced to do or say something you don’t want to. I don’t have to reveal my everyday life and generate content.”
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