The different processes of the mediatization of health

Parte I

By Maria do Carmo Pasquali Falchi, 2021.

One characteristic of the mediatization is the intersection between communication and others knowledge spheres, like politics, sports, religion and health. It is in this interface of communication processes and health that my thesis, that is being developed on the Communication Sciences program of Unisinos, and is also part of Lacim. The research is under the supervision of the professor Pedro Gilberto Gomes and the professor Ana Paula da Rosa. My initial concern is to observe and comprehend the communication experiences of patients with Turner Syndrome (TS and their families on social media. Turner Syndrome is a genetic disorder caused by the total or partial loss of a sex chromosome. It causes short stature, infertility, heart and kidney issues, hearing loss, osteoporosis, non-verbal learning disorder and other health issues. It occurs in 1 of 2500 female births. Because it is a rare disease – only 2% of the fetuses make it to birth – and due to the medical and mediatic invisibility, patients with TS and their families went to the digital sphere to interact with each other.

This scenario has new boundaries with mediatization, because beyond interaction, these girls and women can produce content and put them on circulation, allowing that new meanings are attributed to ST, and creating new elaborations about the disease and about themselves. As a part of my research, and to understand these processes online a series of interviews were made with patients and families that create content about TS on the digital platforms. During the next weeks you will follow these interviews and see the different processes of mediatization of health. All the interviews happened in 2021, and with the exception of the last one – that was given through email- the other three conversations were through Zoom meetings. We thank to the ladies who were interviewed for the collaboration and acceptance of the invitation to be part of this research.

The first interviewee is Brooke Gonsalves, an American who was born with the syndrome. In 2014 she created a YouTube channel called Brooke TV which addresses various topics: hobbies, trips, mental health and TS, for instance. On their videos she brings a hybrid approach, mixing biological aspects and personal experiences. The channel has 970 subscribes and more than160 thousand views.

The different processes of the mediatization of health – Part I

Lacim: Why did you decide to create a YouTube channel? And talk about TS on it?

Brooke: So, when I first started my channel, I actually wasn’t talking about Turners, I started it out talking just about planning me and my husband’s wedding, and then, a year into us have been married, we were looking for getting some fertility teste done, and I knew I wanted to document it, and I was so enjoying sharing on YouTube, I knew I was going to have to figure it out how I was want to approach that, I was not somebody that shared about it before, in fact that was like… I could count on my fingers the people that I told outside of my family, so it was definitely stepping out of my comfort zone, but I was very, very passionate about documenting it, and share it, and that so, that pushed me into approaching that topic and talking about where my infertility was coming from, why we were even doing fertility testing at that point, and kind of more into it, I saw a huge need for some kind of conversations around this that at that time happening. And girls and women and moms were commenting, and reaching out and saying ‘thank you so much … I have this, my daughter has this… we just got the diagnosed and watching your videos has really helped ‘and so this kind of solidified it was something that I wanted to raise awareness for.

Lacim: how did you feel this shift of the objective of your YouTube channel? Did you like it. Was it difficult for you?

Brooke: Was definitely a mindset shift, I had to push past feelings about people’s reactions, and I also really was learning as I went also. There was a lot at that point that I was just doing research on myself, and just learning, so I was kind sharing as I was learning what I was finding out. And I was nervous at first, it was a very strange feeling into me to be so open about having it, because well I am classic. You can’t unless you know what TS is, actually look at me and think there is anything there, think there is anything wrong. And, so I have always had the option of telling people or not telling people, and having who I want to know, know. And letting go of that, and stepping into: no, I am just going to freely talk about this. And shift that for such a big public way it took some getting used to. I think the responses really helped me though, and it became something that shifted to I was just really, really passionate about it. It was a journey to get there. It happened over time.

Lacim: Why did you choose YouTube to talk about it, not Facebook or Instagram? Why was YouTube?

Brooke: Well, the first thing was that I was already sharing things on YouTube primarily. But also, for TS, YouTube it is the second biggest search engine in the world, people use it not just to find funny videos, but they use to get information about things, to find how to do something. There is so much educationally that YouTube has on it, and I think for something so rare, and so unique, having the visual and video format, I think it really helps people getting a better understand of it than just static pictures or text on the screen would, you know… I think it just gives such a rounder understanding of it, and allows you to share on a fuller way, which I really appreciate.

Lacim: Here in Brazil it is rare to have any material [for patients and familes], it was just like what the doctor said, and a few other things that were on medical books, so I think it is a big difference now.

Brooke: Yeah, and I think those medical books and hearing from the doctors is great, I do think hearing it from the person that has it themselves is always one of the most valuable ways of learning something. Particularly was something so complex as TS is, and some of those books, the pictures in them are scary without context.

Lacim: About the channel, how is the process of seeking and checking the information shared on the channel?

Brooke: So, typically, if it is something I am doing research on my back, I would just try to, for better or for the worse, go to Google, and see what pops up, and see what sites are popping up and kind of make sure if I feel like it said it is trusty or not, I do have some particular sites I try to go through though, which is the TSF or TSSUS, they both have some really amazing resources and are heavily involved on medical research and all of that. So I try to stick to those websites and kind of doing my own discerning [sic], with you know, Google’s mass results being what it can bring. If it is a personal story for me, like I am sharing something I am going through or have gone through, I just try to make sure I’ve done the best I can to figure out what the actual facts of something were, make sure I have my actual lab results or paper work of my doctors and things like that, to make sure I am saying it accurately, and giving context. So probably those two big scenarios when I am fact checking what I am sharing and doing research like that.

Lacim: How do you try to make the information about TS more accessible for your followers?

Brooke: I guess it starts making sure I understand it, so I first make sure it is something I am getting digested of, and I am able to understand. And if I am kind of just try to put into context of what the real application with it would be. So, like when I was doing fertility testing, and was using all the jargon and that, FSH and that say what it was, and what it did and what that number actually meant. Things like the COVID- 19 guide lines and all of that information, making sure I was able even myself particularly understand, what the dynamics of everything happening were, and then helping narrow that down into what it was important to highlight and how to put that in context so they could understand it.

Lacim: And, do you believe that happened a change on the medical field through the communicational activities, like you do? Why?

Brooke: I think so, I am not going to say that it had this huge, major impact. But I think in educating others, that are the patients, you know, teaching them: you need to advocate for yourself and ‘this is the best way to do that, and this how you keep yourself informed, so you can’ and that influences their communications with their doctors, and sometimes that means that the doctor ends up getting a better education on it because the patient did a very good job advocating for themselves. And then I also have at least one doctor that has commented on my channel and said ‘thank you, I have never seen a case of this, I have only learned on medical school, thank you for sharing, this helps me understand better’. And that was really encouraging.

Lacim: Do you believe that there is a risk for disinformation about TS through the content shared on multiple platforms?

Brooke: Absolutely! I think that anything on the internet that especially is this complex there is a chance that people will share something that is incorrect, and also there is a chance of someone taking what you said out of context and sharing it incorrectly. That’s also something that I try to be very careful with, making sure I give the disclaimers I need to, to help that and kind of monitoring the comments, so I see what is happening

Lacim: What communicational strategies do you have to promote an interaction with the followers?

Brooke: So, the biggest thing I do is I try to comment back to everybody that comments on my videos, I also have my Facebook and Instagram linked and talk to a lot of people through those channels. And that’s also where I am sharing ‘hey I posted a new video’, so they know it is there.

Lacim: Have you ever had any disrespectful/ negative comment? If yes, how do you deal with it?

Brooke: [I] Have I think the biggest thing you that have to kind of deal with those is remembering that that person probably does not have all the context they would need to understand all of it as far as your side if things or what your perspective or experiences might be. Sometimes is just remembering not everybody is informed on this so they could just be speaking out of needing more education on it. And that is just remembering that is just people on the internet and not letting those derail you too much. And kind of being the sort the difference between a comment that’s just mean versus a comment that is trying to do a constructive criticism.

Lacim: What do you believe is necessary to improve the interaction between girls and women with TS and access to information about Turner Syndrome?

Brooke: So, there is an interesting dynamic particularly when all that I need has been online, which is a whole unique way of interacting. I think, really it is just about trying to be as communicative as possible, and really in deathly explaining things when it is necessary, because sometimes I feel like a lot of interactions can miss a full explanation or, you know, there is more than it is need to be heard or said, that would kind of help. Washed it out wherever the conversation might be, where there could be a more of an understanding. And I think sharing personal stories helps with that too, because you are seeing each have unique experiences. So, it is not one size fits all thing, it is not everybody going to have this. And I think the dynamics of navigating that online is being overly communicative, beyond what you think you need to. Just because so much gests lost on the context of texting, instead of a face-to-face interaction.

Lacim: What are the contributions that the contact and the information about the syndrome can bring to the lives of the patients and their families?

Brooke: I think the community and understanding is huge, like you said, having somebody else that has it to talk to is so valuable. I can’t even put an evaluation on it, because it is so necessary. Even if you don’t think you have a severe health situation with it. Just the little things, being able to have somebody that fully, instead of partially understands is huge, for your confidence, your self-esteem and, honestly, embracing that part of yourself and not feeling like you are an outsider with it. So, that part is huge. For parents I think, just hearing others people’s experiences, you know, ‘we had this come up and we did this, we went like this, we got suggested this to try’. Just hearing everybody’s, for patients and parents, but just hearing everybody’s different experiences with all the different things that can pop up… there have been so much I have learned, jus hearing others people stories and hearing how they handled different stuff, and I love that and I think it is so important.

Lacim: Do you believe that the communication can contribute to end the stigma about Turner Syndrome? Why?

Brooke: Oh yes! So, I feel like the more it has been talked about the less of a weird thing it is going to see like. You know, there was a video that was posted by some area’s local news network on a girl’s TS story with the heart problems. And wow, there were things that I would love to add and adjust in the way they covered it. Just the fact that someone will leave that never having heard of TS before that, and hearing that now is powerful. It is powerful for a lot of reasons: it is powerful for people being able to have awareness, the next time someone says I have TS, it is powerful for those that may not even know that could be a thing for them knowing to check those red flags and make sure that is not what it is, so they get diagnose if they need to.

Lacim: In the US you have some local news that talk about it, but here in Brazil it is like nothing. What do you think about the mediatic representation of TS? How could it be different?

Brooke: So, this is where I get conflicted. There is a really bad representation, I go pretty hard on it, because I feel like you should have done some research. But I think in general it ends up being most coverages I see focus on one aspect of it, instead of giving the full picture of what it is and what it can be, and it think that is a symptom of you can only do so much and TS is such a big thing, so a lot gets lost in this translation from trying to make it and this digestible thing. And I have that issue with some videos too, but I have the context of my whole channel for it. So, there is a slight difference when a news network does a one of little too many coverage. I think to some extent people try, but I think it is just something if you don’t have the time to dedicate to, you are always going to miss something.

Lacim: Talking about your channel, in 2020 you decided to start making interviews with other girls with TS for your channel. Why?

Brooke: I was getting so many comments and messages of others telling little bit and pieces of their stories, and also a kind of sense of everybody was really excited to be hearing other stories. It just seems like such an amazing opportunity, after telling so much of my story, give other girls and women the platform to tell theirs, and on top, kind of more selfishly I really love to get to hear everybody stories, so that was really fun, I kind of became, I felt I was a collector of them, because now I am obsessed with hearing everybody’s stories. And there is so much to learn, it is always such an amazing experience getting to talk to somebody and hearing their story, because I always learn something.

Lacim: And this is related with next question: Do you think that people consider you and expert in TS because if the channel?

Brooke: I do feel there is a fear of that. I think people do to some extent start to try to put me in the I know… if even not an expert, that I understand more than them, so they ask me stuff like that. I mean, is really super detailed, and I am like ‘oh, I need even to figured out if I know how to answer that’. I try to mitigate that, I try to kind of control that, so I make sure everybody understands I am just like you, just doing all of this research. But I do think at some extent the girls that watch kind of put more research behind me than I probably have learned. So, I try to be careful, but I do feel is an easy trap to fall in.

Lacim: How was it for you to talk about TS in a public space? Any negative aspects dilemma or something like that?

Brooke: The only negative aspect was: I did have some people commenting, making assumptions about what my physical health was like because of it, so that was kind of hard. Talking about it in public is interesting, because, it is not, you know, I jumped from barely talking about it with people in my personal life to sharing it for the whole world to see. And you do open yourself up to scrutiny. I kind of have to go into that knowing that, and I had to approach talking about it differently, because this is, well I try to make it, is close to a personal one to one type of conversation, it is really not, even the ones I have sharing it publicly. And I had to get diligent with myself about what I am ok with sharing, what I am not ok with sharing, and know how to handle these things that pop up, like people commenting incorrect information, like people asking really intense medical questions that I wouldn’t know how to answer, because this is on a public platform. So, it opened me up to a whole flood of communications in a lot of different ways, and I kind of just had this synchronous one figure out how to navigate that.

Lacim: And my last question: How this process of having information about TS on digital platforms is different from the time you were diagnosed and the time you were a child? How do feel that change?

Brooke: Oh Gosh, there is so much more information and such better information being shared. We understand more now, and there is a lot more girls and women sharing their stories online. I wish somebody had been talking about it when I was growing up because I would have loved to have watched it. And I think that shift in people starting to share has been huge and the quality of information out there, so the quality has definitely improved, and I think to some extent the amount out of there has too. I think it is a lot easier to find information on it than it was.

Lacim: To end, is there anything you want to add?

Brooke: I just think it is always my goal to encourage others to share their story, in whatever way they can, it doesn’t have to be a YouTube channel, whatever way you can. Just because all of our stories are valuable, all of our stories are important and deserved being heard. So, I would just encourage more of that.

Next week our interviewee is Isabela Ribeiro, a woman with TS from Brasília (the capital of Brazil). Since 2019 she is developing a project on digital platforms to share more information about TS. Do not miss out next interview, with another perspective about the mediatization of health.