- More and more testimonies of the disease or disability are appearing on social networks, Twitter links or Instagram cliches.
- One way to inform your peers, highlight another reality of the disease, and campaign.
- 20 minutes looks at this phenomenon by voicing two influential Tweets on social networks, a digital practice psychologist and a patient who has mounted three closed social networks for patients.
"Without Twitter, it's unlikely that any doctor would find what I'm suffering from," said Sasha, not a binary (who does not identify himself as a man or a woman), who testifies on this social network of his complicated daily life. . Suffering from a depressive disorder (Echers-Danlos Syndrome, or EDS) and post-traumatic stress disorder, this autistic person shares his little wins and ranks on Twitter as Instagram.
1 souvenir thread for children, autism undiagnosed in childhood.
When I was a kid, adults were very, very upset by the fact that I didn't smile. It was a great source of ridicule against me. While only, my expression
– Sasha Tuil (pronouns –l – iel) 🦓 (@DariaAndSisters) January 2, 2019
"I also have a disability in the backbone that makes me a wheelchair … When we want, we don't think, and it's often difficult to imagine people being able to accumulate multiple disabilities and / or chronic illnesses! Sasha says sarcastically. As this person more and more Internet users testify about their daily lives on social networks, with a smile they discover a wig and catheter, launch into
But why discover his patient intimacy on the social network as open (and sometimes violent) as Twitter or Instagram?
Transfer to heal
Telling the pictures or words of his existential questions, his anger, his wounds has always had a curative virtue. "There is this idea of 'extremity', of putting one's intimacy out, which can have a cathartic effect," says Vanessa Lalo, a psychologist and digital practice specialist. Dolphin Blanchard, who shared a thread on Sunday, August 18 (pulled 700 times) on her home dialysis, explains: "You become an actor of your own care. Somewhere, you make peace with the disease by sharing it. "
A little thread to explain my daily life #patient in # dialyseàdomicile.
I dialysis 4 times: Monday / Wednesday / Friday / Sunday.
I certainly have to manage my own #dialyse these 4 days, but not only! 1 / pic.twitter.com/Uhl4BZUFR5
– Dolphin Blanchard (@Galatee) August 18, 2019
"Harnessing the encouragement of these social networks is very powerful on a psychological level," adds Laurel Gerolt-Acolas, founder of the three breast cancer networks,
gynecologist. His scene is set as artistic, humorous and revengeful, depending on his personality and talent. "
Twitter for punk enthusiasts, or Insta for selfie lovers, also requires less investment, time, scientific and digital knowledge than blogging. "I'd like to make a book," Sasha says. Unfortunately, I have very little energy daily and this is a big deal. I don't think I have the strength to do that. "
Above all, these open platforms can reach a large number of people. Dolphin has gradually abandoned his blog to invest on Twitter, which is also because "it's more intense and interactive, a bit like a public place. Listen to whoever wants to hear. " "The book or blog will target a specific audience, often already turned into a cause. Twitter or Instagram will touch people who didn't ask for this information, confirms psychologist Vanessa Lalo. On Facebook, we're more in the middle and people don't have to share this kind of posting. "
Make certain diseases known differently
With this "across the mirror" side, some Internet users hope to understand their feelings, their needs, and their daily lives. And on Instagram, some people are pushing for a better life to announce their bald skull or hospital bed. The specific and human center of attention of certain diseases or treatments is sometimes unknown. "In a medical book or brochure, it can look cool," says Vanessa Lalo. These testimonies demystify care, we put pictures, we put in other words, we are more interested in psychology, she says. It is much more powerful than transmission. "
Pain, humiliation, victory, the surfer is immersed in life and an emotional path to which he rarely has access. "I hope we break the disease taboo, prevent it and remember that we can all be affected," says the psychologist.
This kind of testimony is also about finding support, helping each other. Listening to peers that can take you out of loneliness and isolation often shared when in bed with chemotherapy or chronic fatigue. "On Instagram and Twitter, it is encouraging to show real life photos, the reality of chronic illness and disability, to support each other in difficult times, to share our great and small victories and information," Sasha says. The daily lives of chronically ill and / or handicapped patients remain very "confidential" and often between us. The fact that Twitter is a public network has allowed me to have many, many rewarding meetings. Also, thanks to the help of my peers, I was diagnosed with SED. "
And some also exchange practical tips. "Patients miss a lot of feedback," says Dolphin Blanchard. For example, there were no dialysis patients at my center at home. Once installed, I realized that it was a tough organization. So she shares her tips for diverting applications from her smartphone to better organize this outpatient treatment.
I must also specify the days of dialysis and the time of recovery.
To save time, I created a script (via iPhone Shortcuts) that does almost everything on its own. (It is important to simplify your life) 5 / pic.twitter.com/PEClFvtcvf
– Dolphin Blanchard (@Galatee) August 18, 2019
From the patient, the person becomes a counselor, expert, partner, helpful. "In one post, we do not justify ourselves, we do not answer questions, we decide what we deliver," the psychologist insists. As a way to get your hands back: it's not because I'm sick of it. Some patients tell me that on social networks nobody knows they are in a wheelchair. In reality, as soon as we see the disease, we either look away, or we will pity this person. On the social network, one is just a surfer like everyone else. Wherever you live, whatever your background, you can hear. "While access to health care, support care and associations is easier in Paris than anywhere in France, social networks are becoming more democratic," explains Laurel Gerolt-Acolas.
Forum to promote the causes
Twitter seems to serve more as a platform, a spokesman for the jokes made by other social networks. "Facebook is less useful for activism because it's a smaller circle," Sasha recalls. Problem, it appeared on the timeline of the total stranger, who asked nothing, can lead to a bit of a pleasant exchange. Dolphin Blanchard had to face a number of attacks. “At first I took it to heart. Now I tell myself Twitter is a community, we can't be friends with everyone …, "she philosophizes. Same story for Sasha. "I have experienced a lot of violence and harassment on Twitter, just being disabled, or daring to say we have priority in the queues, for example. But I risk, when I feel capable, to continue to shed light on our lives and reiterate that we have the right to live. "If all the struggles fail, some are happy to have seen the topic of medical violence for months, especially thanks to social media.
This new form of activism also allows to recreate the relationship and thereby improve care. "Twitter is more co-constructed in partnership with bloggers Dolphin Blanchard in advance. This allows us to see the context and limitations of the people … For example, we can find that certain acts of nurses sometimes considered to be abusive derive from institutions-related norms. This virtual dialogue can contribute to a better understanding of the reality of all. The same hope for Sasha. "I testify first and foremost to understand and emphasize our daily lives to valid people, for whom we often simply do not exist. What makes me feel better is knowing that I will receive support from people who understand what I am going through and may open my eyes to someone who is unaware of what we are going through. like everyday difficulties, or part of the problem … "