Emily Miller was a 20-year-old university student in the UK when, shortly after a COVID-19 infection, she started having sensations that mirrored a heart attack. Other bewildering symptoms followed – dizziness, fainting, and uncontrollable muscle spasms. ‘By the time my classes ended I felt drunk, disoriented and my ears would ring,’ Miller wrote in a pinned post on her Instagram page, @thatgirlwithlongcovid_. ‘I couldn’t remember getting home from class.’
Miller is a ‘patient influencer’ – one of a growing number of people who share vivid accounts of their health experiences on social media. She first started posting about life with long COVID because her experience was incredibly isolating while her peers were still partying and going to classes like normal, and she hoped posting online would connect her with other young people in the same situation. Today, she has a small but engaged community of about 4,000 followers on Instagram and 3,000 on TikTok. Miller shares intimate details of life with long COVID, such as photo timelines outlining the onset of her symptoms and videos discussing everyday difficulties.
Patient influencers like Miller often build deeply personal bonds with their followers, many of whom live with the same condition. On a recent pair of Miller’s posts featuring the medical interventions that did and didn’t help her, followers have posted long comments detailing their own treatment experiences and thanking her for her advice.
As valuable as chronic illness content is for spreading awareness and building communities around stigmatised illnesses – maybe you too have found a sense of support and camaraderie from individuals whose experiences you identify with – there are also concerning aspects to this new trend. At the heart of it is the way social media serves up a distorted version of reality, drawing on selected content from patient influencers in ways that often don’t reflect the full range of chronic illness experiences people have in real life.
Patient influencers are often well meaning but can find themselves forced to choose between leaning into these narratives and losing engagement. ‘You’re not [posting] for followers or to get as many views as you possibly can,’ says Miller, ‘but you do want [your content] to be reaching the right people.’
Like Miller, Kaysie was in college when she first developed symptoms she couldn’t make sense of. Along with dizziness and sleepiness, Kaysie started falling down frequently. ‘It was super unclear exactly what the problem was,’ she says.
Hoping to alleviate her uncertainty, Kaysie turned to Reddit – another online environment where patient influencers share their stories and advice – where she saw her symptoms reflected in people’s posts about postural orthostatic tachycardia syndrome (POTS), an autonomic nervous system disorder that causes dizziness and fainting. Reading other people’s stories was comforting, giving Kaysie a framework to make sense of what was happening.
Diagnosis of a chronic illness can take years, particularly for conditions like POTS that aren’t well-understood, so it’s understandable why patients like Kaysie may be drawn to social media’s focus on diagnostic labels (a 2025 study led by the paediatrician Lindsey Daon analysed hundreds of chronic illness posts on Instagram and found that 87 per cent mentioned a specific diagnostic label). Yet this desire for the certainty of a diagnosis can lead to problems. Patient influencers with their own specific diagnosis often list the early signs of their illness that they originally overlooked – such as constant exhaustion, joint pain and dizziness. But symptoms like these can be associated with many different conditions, and followers who latch onto an influencer’s diagnosis often do so prematurely.
People become vigilant to body sensations that match their expectations, and filter out sensations that don’t
This is exactly what happened to Kaysie. Two years after being convinced by patient influencers that she had POTS, she was diagnosed by medical professionals with a different condition – narcolepsy. She learned that she was actually falling down because narcolepsy can cause cataplexy, a sudden, temporary loss of muscle control. ‘I definitely ended up on a weird path that wasn’t quite accurate,’ she says.
A related concern is that patient influencers can teach their followers to centre their own identities around a diagnostic label. ‘I’ve seen people that have ultimately felt a lot of grief because they really feel that they don’t have much left, other than their illness,’ says Sara Davin, a pain psychologist at the Cleveland Clinic.
Patient influencers could also be affecting their followers’ symptoms through a process called social transmission. Health researchers believe this phenomenon occurs because, when people develop expectations about what they should experience, they become vigilant to body sensations that match these expectations, and filter out sensations that don’t.
A 2023 study makes this process vivid. Participants observed someone else undergoing a virtual reality (VR) experience before undergoing it themselves. What participants didn’t know was that some of the people they observed were actors, who modelled the symptoms of cybersickness, a feeling of nausea and discomfort sometimes caused by VR.
Participants were told that the study was about online learning in VR, assessed through a series of memory-based questions, but the researchers’ real aim was to measure participants’ cybersickness. They found that those who viewed an apparently sick actor subsequently reported feeling more cybersickness symptoms themselves, compared with other participants who saw someone use the VR without getting sick. The study serves as a proof of concept confirming that seeing other people’s health experiences can shape our own.
Social media may be an especially fertile breeding ground for this kind of symptom transmission because of its ability to rapidly spread information across large populations. ‘In real life, you only have so much that you can actually observe,’ explains Winston Tan, lead author of the VR study. In contrast, he says that as soon as you go online, you can easily access thousands of people’s stories – and once you start engaging with them, the algorithm is more likely to keep feeding them to you, further heightening your expectations about having these experiences yourself.
None of this means that people’s health experiences should be dismissed just because they see themselves in patient influencer content – after all, the initial draw of the content is that it reflects what they’ve already been experiencing. In these cases, social transmission may be less about causing symptoms in people who were completely healthy and more about intensifying existing symptoms or adding new ones.
One of the most prominent social media-transmitted illnesses is the ‘TikTok tics’ of 2020-21, when neurologists began seeing increasing numbers of teenage patients with tics, or sudden, involuntary movements and sounds. Experts believe this trend was driven by the spread of videos from users with Tourette syndrome, and exacerbated by the anxiety of the COVID-19 pandemic (anxiety is thought to increase the social transmission of symptoms).
Repeated exposure to this highly medicalised content could prompt users to develop false beliefs
Unfortunately, social media algorithms tend to favour exactly those health-related posts that evoke fear and stress. Breonna Winfield (posting on Instagram as @healthywealthydivinesociety) coaches patient influencers and other content creators on how to build their followings. She explains that engagement is best when content is ‘drastic’ or ‘over the top’. She tells me about one particularly successful post that came from a client whose doctors repeatedly told her she just needed to lose weight – until, finally, the client learned that her symptoms were caused by a 30-pound fibroid lodged in her uterus. ‘People were shocked,’ Winfield says. ‘Personal stories that connect with their audience, those go the farthest.’
Daon’s study of Instagram posts backs up this idea. She found that posts featuring photos of invasive medical equipment tended to overperform, or receive more engagement, than other posts from the same account.
She warns that repeated exposure to this highly medicalised content could prompt users to develop false beliefs about the level of treatment their own condition requires. After all, research has shown that knowledge of other people’s personal experiences plays a key role in patients’ healthcare decision-making. Daon tells me she has even noticed patients asking for invasive treatments such as feeding tubes just because they’ve seen them online.
While this phenomenon may seem harmless in a world where doctors still need to prescribe treatments before patients can access them, research shows that patient requests have major influence over what physicians prescribe. (In one study, patients with sciatica symptoms who requested a strong narcotic were significantly more likely to receive one than those who didn’t – which is concerning, the study’s authors noted, because narcotic pain medications aren’t generally recommended for managing sciatica.)
Of course, most patient influencers want to help their followers, not hurt them – and when created with that intention, their content can be a source of comfort and patient education. Now that she has a confirmed diagnosis, Kaysie finds personal stories from Reddit much more useful than she used to. ‘You Google narcolepsy symptoms, and it’s always very general diagnostic information,’ she says. Reading about others’ experiences online has helped her figure out things that her doctor wouldn’t have known about, such as the fact that her cataplexy can be triggered by laughter.
Ella, a young woman who experiences chronic pain, says she finds social media useful for managing her symptoms even though she doesn’t have a specific diagnosis. ‘You don’t have to be diagnosed with something to treat yourself,’ she says. She’s also found ways to protect herself from the risks of harmful or misleading content by being more savvy online. She’s come across illness-related content that she found problematic at times – posts that seemed focused on stirring up emotions more than anything – but she’s noticed that avoiding engaging with this content has trained her algorithm to give her less of it. ‘I only interact with posts that are either educational, people being curious, or some kind of positive take,’ Ella explains. ‘I don’t want to just see people fight about things.’
Other ways to benefit from patient influencers while protecting yourself from the risks include deliberately seeking out people’s positive experiences (in the cybersickness study, researchers found that participants were actually less likely to experience cybersickness if they observed someone undergoing VR without these symptoms than if they didn’t observe anyone at all).
She wants her content to ease viewers’ anxieties, which means working against the algorithm’s desire for emotional stimulation
It’s also important to be wary of posts that centre on medical treatment, keeping in mind that one person’s need for a treatment does not mean everyone with the same condition will need it too. Other people’s experiences can be a valuable source of emotional support and lifestyle advice, but when it comes to the biomedical side of life with chronic illness, speaking to a doctor or finding reputable online sources is more reliable.
Meanwhile, even as the algorithm’s authority over social media content increases, there are still creators who refuse to tailor their content to its demands. ‘It’s important for me to be authentic,’ says Talia Cohen who as ‘Dr Talia PhD’ on Instagram provides chronic illness support to her 14,000-plus followers. ‘If I change myself for the algorithm, I won’t be attracting the people to my community who could really benefit.’
Cohen, who lives with chronic illness herself, wants her content to ease viewers’ anxieties, which means working against the algorithm’s desire for emotional stimulation. ‘I have a very calm tone,’ she says. ‘I don’t want to do anything that contributes to nervous system dysregulation when most people with chronic health conditions already struggle with that.’
Most of her posts are reassuring and involve either a video of her speaking or a line of text against a muted background. One from June contains a carousel of reminders that people with chronic illness may need, including sentiments such as ‘It’s allowed to be painful to think about what your body used to be able to do’ and ‘Compassion for yourself during flares is the best medicine there is.’
Refusing to conform to the algorithm doesn’t happen without consequences, of course, and Cohen has seen drops in engagement as the algorithm continues to shift its priorities. Still, she says: ‘My content will find the right people that it’s meant to find. Even if I’m helping just a few people, it’s worth it.’