After being diagnosed with type 1 diabetes in 2021, British teenager Johnny Bailey felt isolated. That's when he turned to social media, where he found others living with type 1 diabetes. He began to share his experience and now has more than 329,000 followers on his TikTok account, where he regularly posts videos.
These include short clips of him demonstrating how he changes his FreeStyle Libre sensor for his flash glucose monitor. In the videos, Johnny appropriately places his sensor on the back of his arm with background music, makes facial expressions, and transforms a dreaded diabetes-related task into an experience that appears fun and entertaining. In the limited videos I was able to review, he follows all the appropriate steps for sensor placement.
Many youths living with type 1 diabetes struggle with living with a chronic medical condition. Because type 1 diabetes is a rare condition, affecting about 1 in 500 children in the US, many youth may not meet anyone else their age with type 1 diabetes through school, social events, or extracurricular activities.
For adolescents with intensively managed conditions like type 1 diabetes, this can present numerous psychosocial challenges — specifically, many youth experience shame or stigma associated with managing type 1 diabetes.
Diabetes-specific tasks may include wearing an insulin pump, monitoring blood glucose with finger pricks or a continuous glucose monitor (CGM), giving injections of insulin before meals and snacks, adjusting times for meals and snacks based on metabolic needs, waking up in the middle of the night to treat high or low blood glucose — the list goes on and on.
One study estimated that the average time it takes a child with type 1 diabetes to perform diabetes-specific tasks is over 5 hours per day.
Although much of this diabetes management time is spent by parents, as children get older and become teenagers, they are transitioning to taking on more of this responsibility themselves, gradually. Wearing diabetes technology (insulin pumps and CGMs) can draw unwanted attention, leading to diabetes-specific body image concerns. Kids may also have to excuse themselves from an activity to treat a low or high blood glucose, creating uncomfortable situations when others inquire about why the activity was interrupted. As a result, many youths will avoid managing their diabetes properly to avoid drawing unwanted attention, consequently put their health at risk.
So, for many youths with type 1 diabetes, watching Johnny Bailey, or others on social media, may help them feel more comfortable. Those who are afraid of placing their glucose sensor owing to fear of pain may be reassured by seeing Johnny placing his sensor with a smile on his face. Some of his content also highlights other stigmatizing situations that teens may face, for example someone with a judgmental look questioning why he needed to give an insulin injection here.
This highlights an important concept — that people with type 1 diabetes may face criticism when dosing insulin in public, but it doesn't mean they should feel forced to manage diabetes in private unless they choose to. Johnny is an inspirational individual who has bravely taken his type 1 diabetes experiences and used his creative skills to make these seemingly boring health-related tasks fun, interesting and accessible.
Social media has become an outlet for people with type 1 diabetes to connect with others who can relate to their experiences.
However, there's another side to consider. Although social media may provide a great source of support for youth, it may also adversely affect mental health. Just as quickly as social media outlets have grown, so has concern over excessive social media use and its impact on adolescents' mental health. There's a growing body of literature that describes the negative mental health aspects related to social media use.
Some adolescents struggling to manage type 1 diabetes may feel worse when seeing others thrive on social media, which has the potential to worsen stigma and shame. Youth may wonder how someone else is able to manage their type 1 diabetes so well when they are facing so many challenges.
Short videos on social media provide an incomplete picture of living with type 1 diabetes — just a glimpse into others' lives, and only the parts that they want others to see. Managing a chronic condition can't be fully represented in 10-second videos. And if youths choose to post their type 1 diabetes experiences on social media, they also risk receiving backlash or criticism, which can negatively their impact mental health in return.
Furthermore, the content being posted may not always be accurate or educational, leading to the potential for some youth to misunderstand type 1 diabetes.
Although I wouldn't discourage youth with type 1 diabetes from engaging on social media and viewing diabetes-related content, they need to know that social media is flooded with misinformation. Creating an open space for youth to ask their clinicians questions about type 1 diabetes–related topics they view on social media is vital to ensuring they are viewing accurate information, so they are able to continue to manage their diabetes safely.
As a pediatric endocrinologist, I sometimes share resources on social media with patients if I believe it will help them cope with their type 1 diabetes diagnosis and management. I have had numerous patients — many of whom have struggled to accept their diagnosis — mention with joy and excitement that they were following an organization addressing type 1 diabetes on social media.
When making suggestions, I may refer them to The Diabetes Link, an organization with resources for young adults with type 1 diabetes that creates a space to connect with other young adults with type 1 diabetes. diaTribe is another organization created and led by people with diabetes that has a plethora of resources and provides evidence-based education for patients. I have also shared Project 50-in-50, which highlights two individuals with type 1 diabetes hiking the highest peak in each state in less than 50 days. Being able to see type 1 diabetes in a positive light is a huge step toward a more positive outlook on diabetes management.
Lead image: Mikhail Primakov | Dreamstime.com
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Cite this: Social Media Makes Kids With Type 1 Diabetes Feel Less Alone - Medscape - Oct 04, 2023.