Home of viral dances, lip syncs and all manner of content that makes millennials suddenly feel desperately old, TikTok might seem an odd place to raise awareness of chronic health conditions like diabetes. However, the video-sharing platform has been fostering huge numbers of people documenting the day-to-day reality of their health conditions. From comedy snippets about diagnosis to personal reviews of health tech, individuals are creating patient communities through a constant production of relatable content.
Living with diabetes
From an outside perspective, I can see how having a health condition like diabetes could be a lonely and isolating experience. Patients have to regulate their daily health in a way that the vast majority of us take for granted. For people with diabetes, regular adjustments need to be made around diet, exercise and medication, alongside frequent blood sugar monitoring and painful finger pricking tests.
With these factors, coupled with the scary health complications and the enduring social stigma around diabetes, it’s no surprise that people need a space to express themselves and relate to others with shared experiences – and they’ve found it on TikTok.
The influencers reclaiming the conversation
At first glance, you’d be forgiven for assuming best friends Ellen Watson and Beth McDanie were regular glamorous TikTokers, making dance videos and getting dressed up for nights out. However, it was a video of their blood sugar sensors that made them go viral as the Diabetic Duo, catching the attention of both diabetic and mainstream audiences.
Since then, the pair have released a mix of videos about their day-to-day experience of diabetes and amassed 20k followers, and almost 200k likes. Generally light-hearted (although often winking and ironic) the pair satirise elements of their type one diabetes, doctors’ appointments and the reactions they get from friends and strangers to their sensors.
@hillarygrace is another example of an account that’s gained over 500k likes, by making other relatable and funny videos about her diabetes. Frequently warm and charming, Hillary’s videos document her experience in a funny and down-to-earth style that prompts enthusiastic discussions in her comments sections from other users who’ve shared similar experiences. (link to tiktok)
Whilst both of these accounts advocate a radical visibility of their diabetes, they share a tone of voice and style with much of the other viral TikTok content.
Algorithms, visibility and raising awareness of illnesses
TikTok’s democratisation of video editing tools is having a powerful effect on how individuals express themselves and consume social media. This could be particularly beneficial for people who have disabilities or health conditions that mean they spend more time at home.
However, just because these tools are more accessible, it does not mean they are immune from potentially oppressive algorithms. TikTok has been called out for hiding the content of people who have disabilities or individuals who not meet ‘aspirational’ beauty standards, in what they have explained as a misguided attempt to prevent vulnerable users becoming the victims of bullying. More recently, there have been accusations of the company suppressing content tagged #blacklivesmatter, which it has since explained as a ‘display issue’ related to a bug on the platform. TikTok has made the following statement:
"We understand that many assumed this bug to be an intentional act to suppress the experiences and invalidate the emotions felt by the Black community. And we know we have work to do to regain and repair that trust."
A social contract between platforms and users
Platforms like TikTok clearly offer a useful platform for individuals with conditions like diabetes to share their experiences and find solidarity online. However, whilst humanity is in the infancy of its relationship with such forums, there will many issues that arise as usage grows and more people explore ways of expressing themselves. To what extent are these communities self-regulating, or do they need moderation? If so, how can we trust the motives of these moderators, especially as advertising revenues are involved? It’s a difficult judgement to make, but it’s certainly something we should all be mindful of.
Today, there’s a clear desire from the diabetic community for individuals to discuss their health experiences in ways that are authentic to themselves, as well as being informative and entertaining. Video platforms like TikTok provide accessible forums for such communication, and give users opportunities to catalogue their lives, share community jokes, and strengthen digital relationships. In itself, this could become a really positive platform for people to easily share community knowledge and improve their own health outcomes. However, it will need supportive and sensitive algorithms to make sure voices from intersectional communities are connected with each other and have equal opportunity to be heard.
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