Teens with Type 1: Digital Storytelling and Diabetes

by Katherine Doyle

Storytelling is cathartic and therapeutic for young and old alike who are living with chronic conditions, no matter their age at diagnosis. Young people in particular can experience heightened benefits from using their storytelling capabilities on digital platforms and engaging with a community that can support them, either online or in person.

Young media-makers, however, are often viewed through the lens of the banking concept of education that Paulo Freire explores in Pedagogy of the Oppressed. Instead of treating young artists as creative beings with complete and valuable stories to tell, colonized worldviews impose interpretations of right and wrong, good and bad, and talented or lacking on them and their work. In a beautiful argument to the contrary, Paulo Freire and his fellow Third Cinema theorists propose that we do not treat this group as “aspiring” filmmakers; rather, their work should be explored and honored as full-fledged expressions of complex inner lives telling stories about themselves and their experience.

Teens and young adults living with chronic conditions like type 1 (juvenile) diabetes are forced to “come to terms with the fact that their body has broken down in some way,” as Joe Solowiejczyk, MSN, RN, CDE, told me when I interviewed him for an article I wrote about depression in teens with type 1 in 2017. That article confirmed something I had already thought was going on: young people aged 12-17 who have diabetes are more susceptible to major depressive episodes than other kids their age. Although technology has come a long way in alleviating the physical discomfort, major news outlets like the  New York Times have published stories attesting to the unrelenting psychological demands of chronic illness.

Diabetes is particularly mentally challenging because it involves manually regulating the amount of sugar and insulin in the bloodstream with insulin, a process that a body with a fully functioning pancreas handles at the metabolic level. Blood sugar levels fluctuate about every five minutes and everything from food to exercise to sleep to stress make them go up or down. It isn’t an illness that can be treated once a day and then forgotten about until the next day, or even dealt with just once an hour — diabetes is constantly running in the background like a smartphone app. With the addition of continuous glucose monitoring technology in recent years, each decision is recorded and stored in the cloud. Imagine having a record of each bite of cake or pasta or any other food you ever ate!

Jazz Sethi was diagnosed with type 1 diabetes in 2009, when she was 13. She describes the mental aspect of diabetes management like this:

“You don’t control your heartbeat – it just beats. Now imagine having to tell it to pump constantly – that’s what it’s like acting like a pancreas. You have to constantly be aware about what you’re eating, what you’re doing to ensure that what should be an involuntary process – is taken care of. I often also compare it to being on stage. Since I am a performer by profession – managing type 1 is like being the director, the production assistant, the gaffer, the costume designer, the technician and the actor all at the same time.”

Jazz founded a diabetes support group called Diabesties, which is now a registered public trust in India, in 2018.

“I honestly believe, the young people are the ones that are affected the most, and also neglected the most!” she told me. “My doctor coached me very well on all the medical stuff, however no one told me things like how my 10th grade math exam would make my sugars go high, or how to style your clothes with a pump on your stomach, or how emotionally exhausting it got to be type 1 at times.”

I have had type 1 since I was 11, and I’m always evaluating and comparing how my body feels versus how I feel emotionally. I am constantly aware of my body in a way that other people don’t have to be, and it can be confusing to untangle the two because symptoms of high or low blood sugar include irritability, anxiety, headaches, and fatigue, among other unpleasantries. I think about diabetes so often that I can’t count how many decisions I make each day to keep myself healthy and well. By connecting with others who share these challenges, I can maintain a sense of perspective. As a media-maker, I hope that facilitating digital storytelling by young people instead of for them can add another layer to the community support that is so critical to thriving while living with a chronic condition.

Joe Solowiejczyk has been living with diabetes for nearly 60 years. He applies his understanding of the enormous mental burden of diabetes to his work helping families develop strategies for managing type 1 when a child is diagnosed. Last month, Joe told me that he sees the process of sharing stories as a form of self-care that works in tandem with the rigorous, everyday management routines that teens with diabetes must learn to accept, even when it’s difficult to do so.

“[Sharing their stories] doesn’t help improve management or compliance, because there is always this thinking that if you get kids to talk about their issues, that they’ll do better. My experience is that they don’t do better, but they feel better. So there are two things that are going on, I think: there’s management of control and taking care of yourself. I think both are equally important, but not necessarily one impacts the other.”

Other positive effects of storytelling for young people can include building relationships and communities with peers who have the same chronic condition, learning new methods of managing their condition, and achieving positive long-term outcomes through successful transitions like the switch from pediatric to adult care.

A 2020 analysis of arts-based interventions described a project in the United Kingdom involving six teens who made up a focus group for the creation of a DVD for their peers with diabetes. The result was the creation of a DVD that “highlighted that patients can have a ‘normal life’, is really useful for newly diagnosed patients and that diabetes is simply ‘another part of life’.” In France, two groups of 10- and 11-year-olds participated in video workshops during a three-week diabetes camp. One group expressed themselves with puppets in their video project, and another group used discussion. Among other outcomes, this experimental focus on digital storytelling resulted in enhanced self-expression, psychosocial skills, knowledge development, and overall satisfaction with the camp program.

A major component missing from these two studies is visual evidence of the videos themselves, which we can’t experience through the traditional form of publishing research in journals. How large of a role did the participants play in creating media? What were they told about the project beforehand, and did they ideate topics themselves? It’s also not clear to whom the DVD project was distributed in the UK, or where the video projects from France were used. It’s difficult to discern in a scientific setting what level of involvement or influence is completely colonial, or what educational practices actually treat the kids “as beings in the process of becoming” (Freire, 84).

I was asked to develop a digital storytelling workshop for teens with type 1 diabetes and their siblings for the JDRF Type One Summit, an event produced by the Australian arm of the Juvenile Diabetes Research Foundation (JDRF) in Brisbane, Australia, in February 2020. The workshop was a one-day event in which we covered the basics of interview-based storytelling, design and production, and presenting for the rest of the group. My co-facilitators included several young adults, a professional Australian Football League player, and my friend Fi, a diabetes educator — all of whom also have type 1 diabetes.

About 19 teens ages 12-16 participated in our session in which they ideated themes, developed ideas, and chose roles they wanted to fill. We had three production groups: interviews, design, and POV. The outcome was a video that they plan to distribute on JDRF social media channels, including Instagram and Snapchat. I completed the post-production due to time restrictions on our workshop, and I was really impressed with how all of the creative elements they designed came together. Here are a few production stills pending the official video release:

Fiona Scott, who has lived with type 1 for over 20 years, says: “Storytelling at the JDRF summit opened up a world of trust, engagement, empowerment and a sense of belonging amongst teens who participated in the program. It illustrated no journey with diabetes is the same, but there is the unspoken word that united all the teens at that moment in time.”

Insulin pump artwork by Ariya. 

Artwork by Jackson.

Fi also collaborates with teens to put together the annual Dream, Achieve, Succeed event in Geelong, Australia.

“My big belief is, it comes from kids. There’s a big difference from being 15 years old and being 25. They say, it’s great to hear about footy players and guys who climb Mt. Everest, but I’m 14, that’s not me. They want to hear about what other kids are doing. It might be that they want to go on that really big bike trip, but they don’t know how they’re going to bring their hypo food. Or, they want to go to the prom, and don’t know where they’ll carry their insulin.”

Some of the challenges we faced during the workshop included how to navigate distributions of power between different stakeholders, which led me to investigate other obstacles for young artists that inhibit their digital storytelling opportunities, obfuscate channels for sharing their stories, and even create privacy issues. Most teens had access to a smartphone or social media, but not all of them.

Teachers and parents who are educating and empowering young storytellers are responsible for balancing the wishes of the artists and their safety, so informed consent becomes an interesting topic. Traditionally, guardians are responsible for granting permission to use a minor’s image, voice, or likeness; with this model, the wishes of the minor could be overwritten. When young media-makers have more input in the process, the distribution channels can be modified accordingly, and their wishes can be reflected and represented in the end result.

JDRF in the United States and other large US nonprofits are criticized for requesting federal bailout money to continue funding research and technology during the COVID-19 crisis, in addition to accepting funding from pharmaceutical companies, while many people are dying due to lack of access to insulin — the price of which has ballooned astronomically.

I’ve found myself working with many of these nonprofits as a freelance creative with diabetes, and I’ve also volunteered with groups like T1International who don’t accept funding from big pharma. For me, the positive aspects of working through organizations like JDRF to reach young people with diabetes are the built-in connections to a network that I wouldn’t otherwise have access to. Like many of the filmmakers we studied this semester who accepted outside funding and other “traditional” resources, I think it’s possible for media-makers to collaborate with all of these opposing groups in such a way as to amplify these positive elements and also fight for a more just society for people living with chronic conditions.

Many teens do this by taking control of their stories and carving out their own digital storytelling space. Diagnosis stories, self-care, daily struggles, and satire are all widely discussed topics among diabetes-focused accounts managed by teens with type 1, along with access to insulin and equipment, privilege in the diabetes space, and what it means to be a diabetes advocate.

Carolina (Caro) Castilla, who is 17 and has been living with diabetes for five years, actually acknowledged the issue of privilege and access, totally unprompted, when I contacted her about her diabetes blog called Diabeteens (not to be confused with the Diabeteens app/Facebook page created by Georgie Preston in Australia).

“I’m from Mexico,” she told me, “more specifically Monterrey, which is one of the largest and most important cities in the country. (I live in the suburbs, though.) I’m very privileged economically – my parents can pay for all my supplies (insulin, my pump, etc.) and I can see doctors regularly.”

Caro says that she gets a lot of motivation and encouragement out of sharing her diabetes story, and so do people she interacts with.

“I thought that a blog would also allow me to see my progress in thinking and expressing myself over time, which I feel other forms of social media don’t really capture,” she said. “I think the best interactions I’ve had have been with other kids my age. I remember talking with a girl right around my age who was feeling very unmotivated about being diabetic. She really had no intention of taking care of herself. I talked with her about how I felt that way once, but how taking charge of diabetes actually helped me in a lot of aspects in my life; I felt more in control about things.”

Audiences and distribution channels become very important in this context, as do agency over sharing stories. How much can kids understand about the internet and the implications of publishing their original content? Another teen, Abigail Rose, is a 15-year-old blogger from the U.K. Diagnosed with type 1 diabetes just last year, she told me that she is very comfortable with sharing with strangers: “I decided to share my Diabetes story mainly to raise awareness. I love talking about T1 in person just as much as online because you can go into so much detail and depth. I wasn’t expecting to be a part of such a supportive (and unfortunately large) online community.”

“I definitely prefer photos as I can get more creative and I prefer Instagram to any other social media’s as it feels more family oriented if that makes sense,” she said.  “I have a few followers who are either younger teens/children or parent accounts so it has more of a family like feel to it. I feel like we can share both the ups and downs of Diabetes (and life) on here but when I’m blogging I just write about whatever comes to mind.”

It’s probably not surprising that even younger children are comfortable with digital media and taking initiative to share stories about diabetes. I know several families in Manhattan who are navigating the diabetes online community together; with 10-20% of 9- and 10-year-olds using social media, parents and children must negotiate the challenges of sharenting, Internet safety, and consent. Ten-year-old Zoe Kearsey and her mom, Jane, have a pact when it comes to posting on social media: Jane asks for Zoe’s permission before posting any photos of her daughter, like when she shared a photo of Zoe to spread awareness about diabetes in order to raise charitable funds for JDRF when she ran the New York City Marathon.

“I don’t think I really mind because I don’t mind having my mommy post things on social media without me as long as they’re not bad,” Zoe told me over a recent Zoom chat.

Kids around Zoe’s age can network and develop their communication skills thanks to social media, according to a recent NPR article. Zoe and her 13-year-old brother, Max, demonstrate this concept in action through their shared Instagram account, @t1d_siblings.

“We just take photos of us. Sometimes we’ll take a photo or if I have to do an injection, we take a video of that, and [in the captions] I just kind of explain what we’re doing. Actually, my brother does it because I always make it spelled weirdly!” Zoe laughed when she described the account to me. She also said that her mom doesn’t approve posts before they go live, but Jane is one of Zoe and Max’s followers so she can see what they post.

Some former teens with type 1 that produce content geared toward young people can serve as inspiration for content created by teens themselves. Jazz and her team create fun videos like If Disney Princesses had T1D 👸🏼 to reach teens through the Diabesties platform – something she felt was missing from her own experience.

“Our aim is to reach out to [teens] in a language they understand and relate to!” Jazz said. “I have always loved watching YouTube videos of bloggers, and lifestyle vloggers and thought why not create T1D videos with the same oomph and style! We often get content recommendations from our Diabesties groups. I am a believer that with T1D, education brings empowerment – the more aware you are about your condition, the more confident you will be and not fall prey to stigmas and taboos.”

Fabiana Couto, who started the Movimento Divabética (Divabetics) in Brazil, talked about the platform she started for young girls living with type 1 during an interview for Beta Change, a grassroots diabetes organization I volunteer with. I thought about this interview — which I edited and subtitled — as I was researching different diabetes groups because Fabiana emphasized how much her personal experience influenced her need to create a space for young people to connect with each other and share their stories, much like Jazz.

“I felt very lonely, and I only met someone [else] with diabetes at age 26,” said Fabiana, who was diagnosed when she was 13. “So that piece of shared experience and peer support was missing, and nowadays I can look back and see: if I had that, I would have had a different course in my life.”

The Divabetics hold in-person fashion shows and other events, but Fabiana also developed an online presence that includes stories on the Divabética blog and live broadcasts on Facebook. One of her blog posts highlights Maria Emília, who is the teenager behind Diário de uma diabética (Diary of a diabetic). This is one example of a platform geared toward a broad audience elevating the work of adolescents in the diabetes space, putting them on par with the stories of adults.

What does the future of digital storytelling by young adults look like? That answer is complex in the age of Covid-19. Edith Mukantwari, who lives in Kampala, Uganda, said her 2005 type 1 diabetes diagnosis led her to establish Africa Diabetes Alliance, which she is working on registering as a charity, in 2017. She told me that she is continuing to refine the organization’s operation model.

“For the start, we’ve tried online services and those generated a few leads because technology is still minimally adopted around here in Africa. We hope to train more youth in social media advocacy and that might increase our reach and penetration,” she said. “For now, though, it looks really difficult to have workshops for the near future. So, we have to rely on technology probably for the rest of the year. And workshops shall be resumed next year.”

Edith told me that her team is working on their online services, which include a blog. Here’s one instance of story sharing as seen on the Africa Diabetes Alliance website:

“We have mostly gotten stories from adults, but we want to pursue more with teens and young adults,” Edith said. “Sometimes the contributors find us on social media. Other times, we have workshops where we meet more. Usually we do reach out to them to ask them to contribute and we guide their writing a little bit through editing and critiquing a bit just to improve the readability.”

Regardless of the chosen format, there are opportunities for filmmakers, parents, and healthcare providers to better support youth with type 1 diabetes and other chronic illnesses using pillars of Third Cinema. Digital storytelling is an ever-evolving concept, and stories can be told using a video, a blog, or images posted on social media, or other ways of connecting that haven’t been invented yet. Third Cinema puts revolutionary media-makers at the forefront of the digital frontier, and stories told by kids with type 1 can have the most revolutionary impact for both storyteller and audience. As the teens in Brisbane revealed in feedback from the session:

“I really loved making new friends.”
“…people feel the same as me.”
“…we all communicated as a team. We all helped each other.”
“Leaving here with a different perspective on T1D. You are not alone.”

 

Artwork by Ariya.

Copy by the social media team. 

 

REFERENCES

Carroll, A.E., & Frakt, A. (2018). Sometimes patients simply need other patients. The New York Times, <https://www.nytimes.com/2018/07/09/upshot/sometimes-patients-simply-need-other-patients.html?referringSource=articleShare>

Callinan, J., & Coyne, I. (2020). Arts-based interventions to promote transition outcomes for young people with long-term conditions: A review. Chronic Illness, 16(1), 23-40.

Farley, A. (2020). The nonprofit grifters who want a cut of the coronavirus bailout. New Republic, <https://newrepublic.com/article/157686/nonprofit-grifters-want-cut-coronavirus-bailout?utm_content=bufferf4187&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer>

Freire, P. (1970, 1993, 2006). Pedagogy of the oppressed.

Watson, S.K. (2018). A look at social media finds some possible benefits for kids. Shots: Health News from NPR, <https://www.npr.org/sections/health-shots/2018/06/19/621136346/a-look-at-social-media-finds-some-possible-benefits-for-kids>

 

RESOURCES

Production

Joe’s company provides resources and counseling services to patients and their families so they can develop strategies for managing the psychological impacts of type 1 diabetes, as well as offering training for healthcare professionals on family therapy. A Type 1 Diabetes Guide to the Universe is an e-book geared toward kids and families and might be a good place to start for professional filmmakers looking to learn about life with type 1.

I’ve been volunteering my media-making skills with this grassroots organization since 2017, working alongside colleagues in Australia and Singapore. Our main goal is to share diverse stories about life with diabetes around the world through blog posts (called Global Postcards), live interview broadcasts on Facebook and YouTube (called Minisodes), and newsletters recapping advocacy for medication, equipment, education, and support. We ask our contributors to electronically sign a guest contribution form that I developed, which includes our terms and conditions. My teammate Ashley developed a similar form for parents/guardians to give us permission to public content created by and featuring minors. We published a Global Postcard by Bianca Grima, a teenager from Geelong, Australia, in 2019. This model can serve as a reference for other storytellers, though this isn’t a platform created specifically for young adults.

●      Digital Storytelling in the Classroom: New Media Pathways to Literacy, Learning, and Creativity by Jason Ohler

I found this book to be very helpful while preparing to teach the digital storytelling workshop. As a filmmaker gaining teaching experience, it can be refreshing to think about how to bring media-making into a classroom setting.

This thorough production document was designed for a project funded by the Ontario Trillium Foundation and contains some useful guidelines for young people living with HIV/AIDS to express themselves through digital storytelling. It was created by a graduate student from the University of Toronto in 2012, but it’s still a useful tool for filmmakers looking for a starting point for working with teens.

Distribution/Screening

Edith established this Uganda-based organization in 2017. The Africa Diabetes Alliance focuses on diabetes education, peer support, and advocacy. The organization’s operation model is shifting more toward social media advocacy in light of COVID-19, and they are posting content on YouTube, Instagram, Facebook, and Twitter.

Edith says, “I was diagnosed with type 1 diabetes in 2005 while I was in school, and the journey was unfortunately packed with so many challenges. So I and my mentor started Africa Diabetes Alliance to help others navigate this journey better.”

I’ve been a freelance writer for Beyond Type 1 since 2016 and I’ve published and edited dozens of articles for the website. The Beyond Type 1 #LiveBeyond campaign features specific guidelines about submitting photos + captions by and about kids – some of the most thorough I’ve come across in my research – as well as templates for Insta stories and ideas to inspire others.

I volunteered at the Children with Diabetes Friends For Life conferences in college, and it gave me the incredible opportunity to first work with kids with type 1 and their siblings. The CWD Stories section of the website features very short first-person accounts of mainly parents of kids with type 1, FFL conference attendees, and adult role models, but I found this example of a teen’s story alongside them. Stein Portman is definitely among the role models showcased here!

  • Dream, Achieve, Succeed – Fiona Scott

This annual event has been a place for teens in Geelong, Australia, to share their stories about living with diabetes – and meet their role models – for 10 years. Event organizer and diabetes educator Fiona Scott says that the content is determined by kids in the community.

Fi says: “Every year we have a kids panel, because that’s what the kids want! Connecting with your peers is so important.”

Jack Perkins, a race car driver with type 1, was the special guest at the 2019 event, and Joe Solowiejczyk was the special guest in 2015.

Fabiana Couto’s blog is published on the Divabetics website in Portuguese (translated into English courtesy of Google). She has been going live on Facebook and IGTV during COVID-19 to discuss relevant topics about women and diabetes.

I was curious to see what became of the first WHO film festival – it was actually brought to my attention by a diabetes educator and nurse whom I had worked with on a documentary several years ago (and I entered that project into this festival). WHO received over 1200 submissions from over 100 countries for three categories: video reports, animation, and nurses and midwives. Although the award-winning film for the NCD (non-communicable diseases) category was about type 1 diabetes, it was a higher-budget video produced by BBC StoryWorks for the Helmsley Charitable Trust, a funder of Beyond Type 1, JDRF, and other type 1 diabetes orgs. I hope that WHO considers more works by teens and others making films in the vein of Third Cinema in the future!

 

Inspiration

Producers created companion content for the feature-length documentary that screened in April 2013 on PBS. The Portraits section of the Blood Sugar Rising site is similar to the CWD Stories section.

Jazz says: “We are a registered foundation with a board of trustees and advisors, and our aim is very clear: to make those with T1D feel heard, supported, loved, understood and celebrated! Almost always the advocacy and awareness is seen as ‘boring’ and ‘bland’ – and our foundation aims to make it fun, colourful and glamorous.”

Maria Emília and her blog were featured on Movimento Divabética.

This particular event featured the inaugural Spotlight on Storytelling workshop, and I hope that there can be more workshops in the future in both Australia and the United States! Check back soon for the finished videos from 2020.

Logan developed this website as a resource to educate others about diabetes in his own words. This is an interesting twist on other teens’ blogs and social media as he focuses on sharing about diabetes itself (as opposed to sharing his story/others’ stories).

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