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The effect of telling cancer to networks: “This isn’t Netflix; we’re human” | Health and Wellness



The story of cancer came out of the consultations and the privacy of the homes. On social networks, patients undergoing treatment talk about their experiences with the disease, commenting on their daily lives and sharing experiences with other patients. The disease is oral and there are personal stories that attract thousands of followers and support. The account of Elena Huelva, a 20-year-old who explained her life with Ewing’s sarcoma on Instagram, has reached a million followers and her death on January 3 transformed her slogan (“My desires win”) famous topic on Twitter with messages of support and affection for the young woman and her family. The newspaper Hilda Severio, who has had breast cancer since 2014, also has more than 300,000 followers, although these weeks her family has seen the most bitter face of the networks and denounced cases of harassment of women. Experts highlight the benefit of making the disease visible, but also warn about the dangers of revealing cancer in networks: the patient may lose control of their exposure to the public and other patient viewers may become frustrated with others’ story.

Sarah Cervelo is not a friend to tell her life in networking. If anything, he’s using them to spread the word about cancer research and participates in roundtables with experts to give his voice as a cancer patient: 40 and at 37 diagnosed with a breast tumor with bone metastases. “Every patient copes with the disease because they know how, how they can or how they want. I use networks to publish research, but I don’t need to reveal my daily life and create content,” he explains.

She also follows some patients’ accounts, not many: “I follow some of them, but not actively because I don’t want to open Instagram and see patients recount their daily lives with cancer because I already have it,” she admits. Yet she still enjoys the positive that other patients’ story brings: making visible the reality she shares. “The hard truth comes out, that breast cancer isn’t rosy, for example. And when I see accounts like this, I feel like I’m not alone. He advocates the importance of showing the human side, that we’re not just a number. But also suppose that exposure has its risks, such as losing Taking control of this account or forcing you to say what you don’t want to say because of outside pressure: “This isn’t Netflix, an episode every week. That person should be able to say what to explain, when to explain it, and if to stop doing it.”

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Cancer has been vocal about for a long time. Unknown or famous people. From Rocío Jurado at a huge press conference in 2004 where she announced that she had a tumor in the pancreas, to singer Pau Donis, who always spoke publicly and even gave a final interview to journalist Jordi Evol shortly before his death in 2020. Angelina’s announcement also Jolie that she underwent a double mastectomy as a precaution due to her high risk of cancer helped “show an existing reality”, says Sonia Bernas, 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 tick-toker from Alicante who also died last summer from Ewing’s sarcoma, have taken the word to tell, not only the diagnosis, but also his life with the disease.

Experts consulted celebrate the positive impact of cancer reporting in networks and visibility of the disease. It can serve to “demystify” the disease, Bernas says: “Giving a view of all this is good and can help other patients demystify it as they see it day in and day out. But it should be clear that everyone’s experience is different. Every patient is their own.” scientist. There are many types of tumors and each person responds differently,” he warns.

Paco Gil, Head of Psycho-oncology at ICO, stresses that the use of social networks is a “resource that people value”: “The important thing in a social network is the situation with which they face the disease. People feel validated. But it is important that there is truth, And that false illusion is not generated either. No two patients are the same and their coping with the disease is varied, experts insist: Some may make good to tell the world about it and others the opposite.

There is no one way to live with cancer and there is no right or wrong way, warns Tania Estabi, President of the Spanish Society of Psycho-Oncology: “Whoever does it, breathes, feels company, needs it to externalize it. But, be careful, don’t The person who is most exposed has to be the person who is coping best or the person who is most psychologically adapted to the disease. Sometimes the people who establish themselves there do as a way to calm their anxiety.”

“trap” pose

In one of her recent Instagram posts, from the hospital, Hilda Severio pretends to sing a song with her daughter under a text that reads: “We continue the illusion of fighting with joy.” Experts note that a sense of struggle and positivity “can be beneficial” for many patients, but Estapé cautions against the “positive thinking trap” and frustrated patient bystanders who don’t fulfill the patient’s attitude. The patient who tells his life in the networks: “They may feel that if you don’t smile, you’re not doing it well. If I’m not positive, I’m doing it wrong. But it makes sense in the process that you have a bad time. You have to remember that in Networks, you see what the other person wants you to see. It is my job to explain that there is nothing sad or angry about life,” says the psycho-oncologist.

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Experts point out that in cancer “there is a social element to match the times” and that networks, notes Estapé, “are involved in everyday life.” Above all, in the smallest, like Elena. But they remember that space should be left for each patient to carry the disease as they wish: “It seems a duty to explain that, if you don’t tell it, you don’t assume it. But everyone has to do what feels good,” explains Estapé. Cervelló, for example, admits that it took a year for him to announce his illness: “It’s not my business to create content. The time I have is very limited and I’d rather devote my efforts to other things. Seeing that others carry it with more strength or flexibility 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 the voices consulted, is the impact a patient’s death has on followers. “In the women’s group in which I participate, this news reaches all of us and we share it and discuss it. It has a negative impact both on a personal level and on the patient group. It depends a lot on how you manage your life, illness and death,” Cervillo advances.

Estapé admits that after the death of a patient whose life he recounted in the networks, you see a “cascade of depressed or frightened patients” and adds that learning about the death of a famous person is “a trigger for fear of relapse.” With the death of Pau Donis, the psycho-oncologist recalls feeling some of her patients feel, “giving up.” That feeling that no matter what you do, it’s not going to work out.” Gill agrees that, in his view, the death of a known person does not always imply psychological impact, but it does unleash an episode of “emotion” and some patients, for example, cry in consultation and express their feelings.

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Threats and deception

Sonia Bernas, however, defends “responsibility” when sharing content about cancer on social networks. Responsibility for the information that is posted and the exposure that is made through it. “I would advise, if this is done, which is a good thing, to get the support of the oncologist who treats you to be aware of the negative and positive impact that can have.” The doctor states that all published information must be truthful and scientifically validated. “Patients are more aware and empowered, but be careful where you get your information so you don’t create false expectations or say things that aren’t true.”

Hoaxes in health continue to circulate in the networks and the tumor population is the people at risk. Cervelo insists on the “importance of responsible dissemination of information”. “There are many of us watching, the situation is so tragic and you are holding on to sore nails. The ease with which people recommend things without scientific backing is way too cruel.”

You are not cured by being a positive or a good person, Estapé deconstructs: “There is a harmful effect. From a slight depressive tendency they tend to care less about themselves, leave and follow fewer monitoring visits, but it is a very mild attachment,” he qualifies. And he gives another example: “I remember very much the case of Rocío Jurado, the messages on TV that said she would be cured because she is strong, good and courageous. But you have to be careful when using these words because there is always a part of chance in cancer: there are strong, good and brave people who are not cured ” .

As happened in the case of Hilda, the other big risk of exposure in the networks is the harassment that patients may experience. or their families. In her case, Severio’s daughter denounced the “threats”, “disrespect” and demands of her followers who demanded to know her mother’s state of health. At the time, when he thought about the use he would put his disease on the networks, Cervelo really weighed those risks: “And I asked myself: ‘What’s the point of that? Is it going to make up for all of this?’ The risk is that you have no control and that they end up forcing you to do or say.” Something you don’t want. You don’t need day-to-day shaming and creating content.”

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