Sickfluencers, Spoonies & the Systems That Struggle to Contain Them

There’s a pitched battle happening right now — not on a ward, not in Parliament, but in the digital trenches of social media.

Chronic illness. Patient narratives. Doctor-bashing. Miracle cures. Sponsored supplements. TikTok algorithms. Echo chambers dressed up as empowerment.

It’s loud.

It’s messy.

And it’s getting harder to ignore.

Especially if you work in medicine — or anywhere remotely near a consultation room.

Social Media: The New Waiting Room

Let’s start with the obvious: social media is where people are now getting a lot of their medical information. Sometimes it’s amazing — awareness campaigns, advocacy, connection.

Other times?

It’s a pacing app with a side of snake oil. A gut-healing protocol that costs £89.99. A soft-spoken influencer in pastel loungewear saying their doctor didn’t believe them — but this test finally found the answer.

Spoiler: the answer is usually a £49 blood test they’re selling.

Sickfluencers: Hope, Hype & Hashtags

There’s a new type of voice online — the sickfluencer. Someone with a chronic illness (or claiming to have one) who shares their journey, their struggles with healthcare, and their toolkit of tools, supplements, trackers, lifestyle hacks and opinions.

Sometimes it’s honest.

Sometimes it’s performative.

Often, it’s a bit of both.

And the frustrating thing? They’re not always wrong.

Because the system is failing a lot of people.

Because chronic illness is complex and under-supported.

Because general practice is stretched and often out of its depth.

Because no one wants to hear “it’s complicated” when they’re exhausted, scared and desperate.

And so when a confident, articulate person online says: “Here’s what worked for me — and why your doctor didn’t get it”?

That’s seductive. That’s community. That’s belonging.

And it’s also where we start to lose control of the conversation.

Influencer vs. Information

Let me be really clear:

Not all patient advocates are peddling pseudoscience.

Some of them have genuinely shifted my practice — like the CFS/ME community pushing back (rightly) on graded exercise therapy. That was a needed recalibration. I’m grateful for it.

But that’s not what this blog is about.

This is about the fine line between influence and coercion.

Between sharing a lived experience and selling a narrative.

Between advocacy and accidental harm.

Because when you’ve got 300k followers and a discount code for a premium B12 injection not available on the NHS, you’re no longer just a patient.

You’re a brand.

The Consultation is Already Losing

So you’re a GP. You’ve got 10 minutes.

Your patient’s already seen the video. They already know the test they want, the supplement they need, the diagnosis that explains everything. It’s #Validating. #Empowering. #DoctorDidntListen.

You try to explain evidence. You try to navigate guidelines. You try not to sound dismissive when saying “no” to a thing that was already sold to them as “finally being heard.”

It’s impossible.

And that’s before you even get to the fact they’re filming themselves post-consultation for a rant about how the NHS doesn’t care about people like them.

Echo Chambers with Discount Codes

Here’s what scares me:

• The commercialisation of chronic illness.

• The confirmation bias dressed as community.

• The unregulated health claims wrapped in pastel branding.

• The way some influencers monetise mistrust.

And it’s not about people being “wrong” — it’s about how hard it is to moderate nuance online.

Some of these platforms are unfiltered, raw expressions of grief, pain and trauma. And they should be heard. But some are also TikTok storefronts. Sponsored by distrust. Powered by frustration. And aimed directly at the credibility of clinicians.

So What Do We Do?

Honestly? I don’t know.

Because I don’t want to be the bitter doctor shouting into the algorithm.

Because I respect the voices who speak up when they’ve been dismissed.

Because I hate that people are falling through cracks and finding more care in comments sections than in clinics.

But I’m also worried.

Worried that medicine is too slow, too careful, too old-school to fight back.

Worried that we’re encouraging digital advocacy while losing control of the narrative.

Worried that people are getting good stories instead of good science — and we can’t keep up.

And worried that we won’t see how deep this all runs until it’s too late.

Stay Critical.

Community is powerful. But so is context.

— DW