The Sickfluencer Scam : A Threat To Advocacy & Support

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If you’ve been online lately you’ve probably seen the hubbub around the “sickfluencer” Telegraph article and the widespread backlash it has received. I wasn’t sure whether to weigh in on this, partly because I don’t consider myself an influencer and partly because many battle-ready individuals are already fighting back.

The problem is, this whole thing has really boils my piss. I’m sick and tired of being sick and tired, but it’s the fighting against the tide of medical professionals, disability benefits assessors, strangers, politicians and mass media that is both enraging and so immensely exhausting.

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The Incendiary Telegraph Article

The article in question was written by Poppy Coburn and published by the Telegraph with the title “How having a disability became cool”. It’s an incendiary title designed to spark debate, and that spark certainly ignited. For good reason, in my opinion. 

The general gist is the author claiming individuals online, either with a real illness or not I guess, are making health problems seem cool and enviable. The focus seems disturbingly narrow, specifying “young women” and going further as to refer to medical conditions that they feel have an air of questionability about them, as though they may not be “real” conditions at all. 

The author writes, “Young women, nicknamed ‘sickfluencers’, are turning chronic illness into a lifestyle trend and entrenching a culture of economic inactivity”. 

The sizzling underlying message that seems to be woven through the article is that the conditions are often not even real : “…were they not decked out in the accessories of their disease, it would be impossible to perceive the conditions they consider to be so central to their interaction with the world”. 

The author seems to refer to both chronically ill individuals and those who just perceive themselves to be, with conditions the author seems to suggest maybe aren’t quite really real things, like POTS. The author suggests individuals have given themselves diagnoses, and then called out misogynistic and gaslighting doctors for not believing them, before taking themselves to online spheres to get validation from strangers instead.

But hey, let’s just overlook that there is a huge problem with the medical system, and let’s also overlook that POTS really is a really real thing. 

The Bigger Picture: Increasing Rhetoric & Hate

This article didn’t appear out of nowhere. It’s carefully crafted to fan the flames of the ever-increasing vitriol, stigma and negativity where sickness, disability and benefits are concerned.

Maybe you’ve witnessed the increasing abuse online from strangers towards the sick and disabled. Sometimes people just love to hate, insulting others to make themselves feel superior. 

Maybe you’ve also noticed the increasing negative social commentary on deliberately negative mainstream media articles, and the sharp focus of certain politicians towards to the ‘work shy’ benefits claimants and how they’re bankrupting the country.

Now, it’s obvious why certain people and outlets spew what they spew. Media want explosive articles that spark debate, for better or for worse, and they want content that serves their purpose and aligns with their political stances. Politicians are going after what they think their potential future voters want to hear, and sadly the focus is honing in almost exclusively on illegal immigrants and the sick/disabled. 

Where I Concede To Some Small Degree

I at least don’t disagree that there will be people who somehow “game” the system. It’s the case with everything in life; there will always be a minority who do horrible things, who abuse a system, who take advantage. There will also be some individuals who claim they can’t work for an issue that the vast majority of people wouldn’t consider a reason for nixing the idea of employment.

Lately, media focus seems to highlight mental health issues like anxiety, or neurodevelopment issues like ADHD. I would agree that either such issue doesn’t automatically mean you can’t work. There are degrees to both and at the higher end of the spectrum is severe anxiety or severe ADHD, often tied into other issues, and that picture then becomes far more complex. Those cases, however, will be the minority.

Yes, I also think there’s a risk of trying to medically label facets of life and our personalities that are just par for the course, interwoven facets of life as a human being. Giving it a diagnosis seems to equate it to a fault and a handicap, which isn’t necessarily helpful or relevant. 

It also seems there’s also a growing social belief that the younger generation aren’t hardy to life’s problems. But as with all such unflattering stereotypes and assumptions, it will not apply to all young people of today. A new review that looked at calling gen Z “snowflakes” has suggested they actually face greater mental distress, that it’s now even “harder to be young” in today’s world.

Why will some small minority of people make up conditions and symptoms they don’t have? Why will some refuse to work despite the capacity to do so? Why do some take a competitive stance on their problems as though being sick-er is an Olympic sport to be won?

Personally, I’d love nothing more to have my life back and say I’m healthy and revert back to only being able to say I feel for all those worse off than me.

Regardless of all of this, there is an outstanding difference between this small minority of individuals who may take advantage or somehow ‘cheat the system’, and online users and content creators sharing their experiences and trying to help others in a similarly awful boat. 

Where Are These Young Women Going On Jollies With Walking Sticks?

I’m quite glad I’m too old to be considered a Gen Z young woman. I’m just a late-30-something prancing around with a walking stick, which is so much fun I debating killing myself so many times over the last decade since getting sick. I cried and baulked many times at the thought of needing to use one. I still get looks. I still feel judged. I still look, though perhaps to a lesser degree these days, “normal” and “fine”, if you don’t count the stick.

And therein lies the issue with conditions you can’t see. Invisible illnesses and chronic pain conditions are still real even if you can’t instantly and overtly see them. The air we breathe is still real even though it’s not visible.

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I’ve yet to see any young women dancing and posing their way through town or around Tesco with a walking stick or crutches they don’t need.

That’s not to say that “sickfluencers” don’t exist. I’m sure they do. Probably as many as I can count on one hand but still, there likely really are asshats who tell others how to game the system to receive benefits, or whatever else it is the author may claim they do.

I’m still befuddled at how gaming the system is even possible given how difficult applying for benefits is and how all conditions must be evidenced. Meanwhile, many individuals who are struggling with well-defined medical conditions are rejected. Go figure. 

Cool Accessories, Dude!

I for one am grateful that medical devices and mobility aids – or “accessories” as the article refers to them – are being modernised. Historically, the likes of stoma bags and walking sticks were consigned to the so-called old and infirm, sold in drab colours and bulky designs. 

Medical literature would always show older individuals with stoma bags, and ditto advertising and general imagery around mobility products and living aids would show older users. Today, younger people are included in the mix. 

The benefits are two fold : Products designed to meet our needs of today far better, and greater inclusivity. There will always be a wide range of ages who have stomas, need wheelchairs, use rollators, need adaptive cutlery and so on. No longer will these different types and ages of people feel quite so alone in their needs. Nor will they be relegated to only the most ugly or impractical of products.

I always like to say that life is too short for a boring mobility aid. But when I first started using a walking stick, I hated it and I was so self-conscious that I avoided it for as long as possible. I never would have told a soul about my stoma bag either. The only way I could move forwards was to try to embrace these things to some degree. I’ve found the newer black stoma bags and a more vibrant walking stick feel more ‘me’. 

Exposing these parts of your medical conditions to others can help you gain a little more confidence, or at least help you feel a little less horrified and ashamed about them. Viewing others doing this online is often what gives that person the impetus and oomph they need to share something themselves. All of this sharing breaks down barriers, kickstarts conversations and challenges assumptions.

It’s not making it trendy and fashionable to sell more aesthetically pleasing products or to photograph yourself using them. It’s not like starting people on cigarettes, tempting them into the life of smoking. If you need these things anyway, it’s great they’re now more accessible and less off-putting.

Budgets & Benefits

Political parties have been banding around their own opinions and suggestions when it comes to benefit reform. More recently they’ve tried to reduce PIP almost as a disincentive for new claimants, I imagine in the hopes that people will just refuse to become disabled. 

There’s talk of a spiralling benefits bill, as though its this that is ruining our country. But the same time there’s talk of the UK having no money, we’re giving out millions to help continue a war rather than help to find a peaceful solution to save lives. The magic money tree does exist after all. Consequently, thanks to fanning the flames of war and inserting ourselves into the firing line, we now need to spend more on the war and on our own defence. 

But instead of the magic money tree coming to the rescue, some politicians are suggesting cuts to benefits to fund our military readiness. The sick, the disabled, the elderly, the carers. Thrown to the wolves yet again. 

Manipulation & Mis-Truths 

I don’t want to say certain politicians and media outlets are lying, so I’ll go with saying there’s a degree of manipulation and mistruths being thrown around. Thankfully there are eagle eyed and clever bastards out there who pick up on the inaccuracies and call them out for it. Organisations like the fantastic Disability News Service likewise help in fighting the tide of misinformation.

But too often this manipulation is appallingly coming from those who should be upholding standards of truth and decency. Psychologically it makes sense that some readers will go on to selectively believe what fits with their schema of understanding, which is based on what they’ve already learned and what they continue to get shoved in their faces. 

They may not necessarily question the claims that the benefits bill is “spiralling” out of control. They may take as fact that those with ADHD or anxiety are getting luxury free cars. It’s not correct and it’s not the whole story. Not by a long shot. But you’re told it enough times in enough ways, and the social tide is inclined towards believing people are living it up on benefits and having the time of their lives. 

Am I A Sickfluencer?

If you’ve asked yourself this questions, I suggest you ask a few follow-up questions: 

• Am I just pretending to be sick and/or disabled?
• Am I telling others how to somehow cheat the system to claim benefits?
• Am I telling everyone to get themselves a disability because life being sick and in pain is just the dog’s bollocks?

If, as I suspect, you answer ‘no’ to these, I’m pretty sure you’re not a sickfluencer. You’re just a regular sick person. Bummer. 

The Danger This Poses To Our Minority Community 

The sick and disabled are a minority group in their own right, and it’s a minority group that anybody can join, at any time in their life. It’s like that expression: Shit happens. You may be born with medical issues, you may develop them, and everyone’s experience is unique. What’s the same across the board is that we didn’t ask for this. We don’t want this. Nobody in their right mind would, right? 

I lost a lot when I developed health issues, and I wouldn’t wish it on anyone. I’ve struggled to survive and I’m only still kicking to try to help look out for my parents who have themselves struggled with ill health and mobility problems as they reach their late 70s. It’s not living, it’s just getting by. But maybe it’s time to change that. My life as I knew it was destroyed, but there should still be some good to eek out of what remains. Nobody should be denied that. 

Furthermore, this latest ‘sickfluencer’ article is reinforcing the warped biased against women presenting with genuine medical issues, who are too often brushed off by medics and considered to be either wrong or hysterically over-exaggerating. 

We’ve struggled to move past this ingrained tendency and bias, and it has cost many patients dearly. We pay for the medical ignorance with our health, and some pay for it with their lives. 

Though not contained to women nor even to young patients, this lacklustre approach and scepticism where health problems are concerned is a big deal. Why aren’t we talking about that? Why aren’t we recognising how many of us were fobbed off, misdiagnosed and mistreated? 

Advocacy & Support Is Not Sickfluencing

Enter the bloggers, the Instagrammers, the YouTubers, the writers and the Podcasters. A veritable army of badasses helping change the conversation and make a difference wherever they can. 

Some people may have started out just sharing their own experience, helping themselves to deal with what’s going on in their life. Some may be focusing more on helping others, be that through tips and advice (such as how I’ve written about tips for coping) , or supportive articles to show the reader or listener they’re not alone. 

God knows so many of us have been gaslit, neglected, abused and fobbed off over time. We’ve lost friends, family, colleagues, employment, money, the ability to have children, hobbies. It’s a lonely place to be. 

The online community is a valuable and precious resource for both the authors and the recipients. This is being tainted like piss in a swimming pool by the “sickfluencer” con and negative rhetoric. 

The not-sickfluencers are raising awareness of symptoms and medical conditions. They’re making changes in healthcare and pushing for changes to legislation. They’re sharing their stories to help others, giving those who need it a confidence boost. They’re providing tips and product recommendations to hopefully make a small improvement to the lives of others.

If they don’t stand up for their minority community, who the hell will?

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I Do NOT RECOMMEND This

I don’t want to be sick or to live in so much pain every goddamn second of every day that I can’t think straight. It’s not a choice, it’s not fun, and it is most certainly not “cool”. 

I do NOT recommend getting a medical condition or disability. I do NOT recommend having to lose who you are and the future you thought you’d have. 

I do NOT recommend the shame and embarrassment and sense of defensiveness you feel when you have to fight for your health with medical professionals who fob you off, or having to fight to get disability benefits. 

I do NOT recommend feeling so vulnerable and judged by strangers for using a disabled toilet or putting your blue badge in your car when parking. 

I do NOT recommend feeling like nobody understands or “gets” what it’s like to feel the way you do and live the way you have to.

I do NOT recommend being so unwell that you’re surprised your still alive, while struggling so much mentally and physically that you wish you weren’t. 

The end.

If you’ve read the article, what are your thoughts? Do you also feel the sickfluencer angle is an unjust assumption that threatens advocacy and undermines patients further?

Caz  ♥

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