Social Media Video Helps Change Perception of Type 1 Diabetes

Becky McCall

Disclosures

March 24, 2020

A video clip posted on TikTok (a video-sharing social networking service), made by two students with type 1 diabetes, places a positive spin on the disease as the young women dress up for a night out and dance around with their glucose monitors clearly on display.

Most people wear the small white discs under their clothing but instead they boldly display them on their upper arms.

Nicknamed the Diabetic Duo, the best friends from Northern Ireland, Ellen Watson and Beth McDaniel, point to the discs that constitute the FreeStyle Libre (Abbott) glucose monitors.

The video clip has received more than 700,000 views and shows how social media can contribute to changing perceptions of type 1 diabetes.

Ellen Watson, a 20-year-old marketing student at Ulster University has had type 1 diabetes for 13 years. Her friend and fellow student, Beth McDaniel, was only diagnosed 6 months ago.

Sensors Became 'Fashion Accessories'

Ellen Watson spoke to Medscape UK about her experience with stigma and public perception of the disease. "For me diabetes doesn't define a person, you can live a near normal life but just need to be a bit more careful with control [of sugar levels]. You can be spontaneous but remember to keep a bottle of something in case you go low. Things have improved a lot with all the new technology available now."

The young women made the video clip without any intentions of relating it to diabetes – the video was meant to be about their cosmetic transformation from before getting ready to becoming fully made-up for a night out. "We just happened to get both our arm scanners in shot at the same time," Ellen Watson explained.

"We wear the scanners like a fashion accessory, like flashing an earring to the camera," she remarked. "When I first got the Libre I hated it and was embarrassed about it but that's changed. I wouldn't have done this a few years ago and now you'd have a fight to get it off me!"

She explained that she has experienced the ongoing stigma associated with diabetes: "There's very little education about type 1, but there is about type 2. People think we can't do sport with type 1, they think we should be overweight.

"We make the videos to show we're normal - we love a bit of glamour, sport, shopping, nightlife, and to study, and we do all this while managing our diabetes."

Advocacy Can Be Fun

The Libre monitoring system — also known as flash glucose monitoring – requires users to scan a sensor worn on the upper arm with a mobile phone. It does not require fingerstick calibration. The sensor goes just under the skin and is connected to a white, water-resistant plastic patch similar in size to a £2 coin. It monitors the glucose levels in the interstitial fluid and is fitted with a transmitter that wirelessly sends results to the scanner/smart phone app.

Prof Partha Kar, is a consultant in diabetes & endocrinology at Portsmouth Hospitals NHS Trust, as well as national specialty advisor for diabetes with NHS England. He has long had a specific interest in type 1 diabetes and digital innovation, and welcomes the outreach offered by the students.

"As national policy lead for type 1 diabetes, this type of outreach is a massive help to overall public understanding of type 1 diabetes," he said.

Ironically, the transformation video has actually facilitated an unintended transformation in perception of type 1 diabetes among Ellen and Beth's followers at least. "It shows that, within reason, someone with type 1 diabetes can lead a relatively normal life and be a regular teenager and do their thing. Their message is, 'It's not negative, and don't get down'. Most importantly it cuts across stigma," said the professor.

Unlike many orchestrated campaigns, the success of these video clips in advocating for living with type 1 diabetes is unintentional, said Prof Kar. "It's advocacy but doing it in a fun way. The girls didn't go out on a mission to be advocates exactly, it was just them showing how as friends they go out and enjoy their lives. It's just what they do. There's a freshness about this especially because it isn't linked to campaigns. It's just them!"

As well as the TikTok pair, Prof Kar also highlighted the efforts of celebrities such as the actor, James Norton, who actively discusses his type 1 diabetes on social media, and the rugby player Henry Slade, among others. "The more this happens, the more awareness is raised and positive messages about type 1 diabetes are spread on social media. This is a very good thing." 

It is not uncommon for people – young and old - diagnosed with type 1 diabetes to find both accepting the diagnosis and living with the disease daunting, isolating and depressing, he added.

"One initiative here in the UK is TAD (Talking About Diabetes)," he said, highlighting a development that epitomises the need to open up a wider public conversation around diabetes. TAD provides a podium for celebrities, athletes, patients, and healthcare professionals to share their personal experiences of type 1 diabetes, remove barriers, and harness innovation, especially new technology.

"TAD involves five or six speakers from different walks of life who come out and say 'hey listen we have type 1 diabetes and it's nothing to worry about, this is how we live our lives.' TAD has had Theresa May and pilots for Boeing speaking out."

Ellen Watson and Beth McDaniels plan to continue making their videos about living with type 1 diabetes and are in the process of adding to their collection of 'injection in strange places', where they show themselves injecting in front of a police van, on top of a human pyramid, and hula hooping.

COI: Ms Watson, Ms McDaniels, and Professor Kar have declared no conflicts of interest.

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