
It started with a TikTok scroll. Between the ASMR un-boxings, time-lapse videos of home renovations and viral make-up hacks, I stumbled across a video that stopped me cold. The creator behind it described a litany of symptoms – hypermobile joints, chronic pain, digestive issues – that could have been describing my own body. The caption? “Living with Ehlers-Danlos Syndrome.” I watched it again, stunned. Could this be a name for what I’ve been grappling with my whole life?
For years, I’d been brushed off by doctors who usually chalked my symptoms up to anxiety – if they believed me in the first place. Like many women with invisible illnesses, I’d learned to push through the symptoms. But as I delved deeper into the world of TikTok creators living with Ehlers-Danlos Syndrome (EDS), I realised their experiences mirrored mine so precisely that I couldn’t ignore it. It was the start of a journey that would lead to a life-altering diagnosis – one that TikTok had somehow helped me to pinpoint when no doctor could. So, how exactly did a social media app know me so well?
“Google has been playing doctor for decades, but now, we’re dealing with a platform that works on two heuristics, emotion and frequency, designed to keep you engaged,” explains Dr Brandie Nonnecke, founding director of the Citris Policy Lab and associate research professor at the Goldman School of Public Policy (GSPP), where she directs the Tech Policy Initiative. “The more you engage with a certain type of content the more it gets fed back to you, and that process gets refined until it hits that sweet spot where it’s like, ‘We’ve got you.’” I looked back at my saved TikToks. It was full of hacks for chronic joint pain and exercises for craniocervical instability. There were videos breaking down the best sleep positions to try if you always wake up tired; supplement recommendations for brain fog and dizziness; lists of foods to avoid in order to calm an inflamed gut… Each one of these videos, it seems, acted as a breadcrumb that led the algorithm down the trail towards serving me that fateful EDS clip, and my own personal eureka moment.
I’m not the only person finding these sorts of insights on TikTok. The platform has become a surprising hub for health awareness, especially for those with rare or underdiagnosed conditions who have been failed or forgotten by traditional care pathways. EDS is the perfect example. It’s a group of inherited disorders affecting connective tissues that support skin, joints and organs. The most common subtype, Hypermobile EDS (HEDS), is far more prevalent than previously thought, especially among women. “The assertion that HEDS is a rare disease should be reconsidered,” says Susan Booth, CEO of Ehlers-Danlos Support UK. “Plus, there’s a clear gender disparity, with studies showing that 70 per cent of individuals with HEDS or joint hypermobility syndrome are female.”
Despite its prevalence, patients wait an average of 20 years for a diagnosis. “Like many conditions affecting women, it hasn’t been studied or taken seriously,’ explains Dr Stephanie Barrett, a consultant rheumatologist. “The British Society of Rheumatology’s guidelines allow rheumatologists – who would be the natural first port of call – to decline referrals if hypermobility is mentioned, so patients are referred to different specialists with no centralised care, and no one putting the pieces of the puzzle together.”
Ultimately, people end up back at their GP, where things frequently don’t get much better. “GPs and healthcare professionals often don’t know how to diagnose or treat it,” says Booth. “HEDS and Hypermobility Spectrum Disorder are expected to be dealt with in primary care, but there are no clear pathways for management.”
Yet, as Dr Barrett explains, there are effective strategies to manage EDS and its associated symptoms – if only patients were given the right tools. “There are ways of treating it. We’re using repetitive transcranial magnetic stimulation (RTMS) to help with chronic pain associated with EDS, as well as common comorbidities – diseases where more than one factor is at play – like dysautonomia, fibromyalgia and Mast Cell Activation Syndrome.” The pioneering treatment uses electromagnetic pulses to help manage chronic pain by targeting its root cause. “It’s non-invasive, pain-free, and over 93 per cent of our patients experience meaningful improvements.”
While RTMS is not available on the NHS, Ehlers-Danlos Support UK is working tirelessly on a care plan that can be rolled out in primary care across the UK. “We’re creating a new clinical pathway that helps GPs diagnose the condition, as well as a tool kit for treatment, including pain management, physiotherapy, occupational therapy, when and where to refer patients for common comorbidities, as well as information on support groups,” says Booth.
Charities like Ehlers-Danlos Support UK play a critical role in bridging the gap for patients, and unlike with TikTok, you can be confident the information and advice they provide is reliable. While the ability to take your health into your own hands can feel empowering, social media is notoriously rife with misinformation. “Videos have become increasingly sensational and clickbaity to trigger a bigger dopamine release in viewers, which drives higher engagement,” Dr Nonnecke warns. “It’s a very hard area to regulate, even self regulation by the platforms themselves has proven difficult. It can easily lead to misdiagnosing yourself or being influenced to take actions counterproductive to becoming healthier.”
For me, TikTok wasn’t a replacement for my doctor but a starting point – a catalyst that led me from late-night research and medical papers to support groups where I felt understood for the first time. Armed with this knowledge, I went to my GP equipped to articulate my symptoms and advocate for the answers I needed. The diagnosis wasn’t a cure, but it did bring clarity and validation after years of uncertainty, giving me the tools to better understand and manage my condition. I had spent so long questioning why I felt tired or in pain, but what I’d once dismissed as personal failings were actually legitimate symptoms that I’d been pushing through all along. While TikTok’s algorithm is often criticised for its quirks and controversies, I’ll always be grateful for how it has helped me, as I know so many others will be, too.
Always speak to your GP if you are concerned about your health