As this post is so long, I’ve put a short bulleted list at the end of how to identify a scammer, based off the longer text. Use it if you need.
The EDS community has a scammer problem. Well, the disability community in general has a scammer problem, but I know about it in the EDS community, so hear me out.
Our online communities are tight-knit and ragged at the edges. Everyone knows everyone, somehow, they’re a friend-of-a-friend and thus everyone trusts everyone. We all know the score – We’re skint, our governments are disenfranchising us, we’re in pain – so we all tend towards being nice and accommodating and trusting one another. After all, if you can’t show your bones around another person with EDS, where can you? The ragged edges of the community are the people that we all know on-sight, but aren’t necessarily that close to, but, because of that shared diagnosis and that assumed shared experience, we all just trust and let them in. They cry out, we listen. They blame, we believe. They ask for money, we give.
Some of them are genuine. Many of them, as time goes on, turn out to be not. They might want money (they usually want money), they might want attention, they might want to feel loved, they might even just enjoy the feeling of control of being able to sic an online mob on someone.
So, here’s a couple of observations on characteristics of the scammer, and particularly the EDS scammer. Now, a lot of these will apply to genuine people, so if you read this and go “Hang on that’s me, but I’m genuine”… You should probably be the most enraged, because these fucking frauds have taken your identity, your history, your daily life, and turned it into something that they can milk on the internet for cash and attention.
You’ll note that the word “Crisis” turns up a lot. That’s because these people thrive on a sense of crisis and urgency. If it’s *desperate* and *immediate* and *life or death*, you’ll respond more quickly, you’ll give money, you’ll retweet them, you’ll share their fundraiser, you’ll dogpile their “enemies”. If there’s not a sense of growing, gathering doom and the world being all out to get them, their readers might step back and think; Hang on, is this all real?
Also, this is a long post. It’s long because of how these people work – they throw a huge amount of information at you, a huge amount of contradictions, a huge amount of equivocation and reasoning and extraneous detail in order to make themselves and their story seem hyper-real, and trying to pin that down is difficult. So it’s taken a lot of words to pin it down, and I’ve probably still not done it right.
I have no idea how to clearly get across that I absolutely do not mean genuine-people-with-complex-and-seemingly-contradictory-stories, I mean scammers, absolute scammers, and I’m trying to precis a way to describe them. Many genuine people have complicated, unpleasant lives. These people, as I said above, prey on them by pretending to be one of them, and using the trust and goodwill of that community to gain money and attention.
Observation 1: Every crisis in the news applies to them, personally.
I first found scammers like this through the EDS community, but then I noticed that they scammed on a dozen fronts at once, usually by coopting anything that was in the headlines and making it about them, personally.
The most egregious examples of this will make their family trees impossibly multi-national and multi-ethnic. Not just “My maternal grandmother was X and my paternal great-grandfather was Y, so we had some X and Y culture around the house when I was growing up” but literally it will change over time. So, if there was a crisis in Egypt, their whole upbringing will have revolved around their Egyptian grandmother, they’ll have grown up speaking Arabic, and been subject to anti-Arab prejudices and stereotypes, and have considered themselves to be Arab. A week later, when there’s a news story from Brazil, they’ll have grown up speaking Portuguese thanks to their Portuguese grandfather, and been perceived as and considered themself to be Latino. Over time, the story will change – The Russian grandmother was his grandfather’s second wife, the Tajikistani uncles will be old friends-of-the-family, the Cherokee great-grandmother will have been raised off-reservation and never enrolled. Usually there’ll be a Family Tragedy which is why the story keeps changing, or why the scammer doesn’t speak to, or like speaking about, individuals in their family unless it’s in great, sweeping, stereotypical terms (“Baba always washed things in dilute bleach and sang old folktales and reminisced about living in a vardo as a girl”, never “Baba loved plaiting my hair and kept bull-terriers and ate endless frozen pizzas”). Conveniently, whatever ethnic background they claim, they’ll always look as white as milk. Often, they’ll complain that photos “make them look white”, or they’ll draw particular attention to any feature of their face that could be thought of as being stereotypically similar to the current group that’s being marginalised (“I look so white in this photo, but my eyes are Indian”) since, well, if you’re told that something looks like something, you’ll probably agree, or at least you’re primed to agree. Especially if it’s someone’s face. They’ll use the principle of politeness – that you should never tell someone that you disbelieve their experiences – to hide this in plain sight. After all, if they’re telling you, week-in week-out that they’re experiencing street and institutional racism, who are you to say “But… You look white, you’re ginger, you have blue eyes…” The issues faced by the people in the news will pale in comparison to the affect that it’s having on them! Give them money!
They’ll have friends or family in every city that appears on the news. One of the ways that I first spotted my first scammer who acted like this was that he described me as “A close friend” when there was a news-level incident in the city I lived in. He milked money from the crowd by fretting that he thought he’d never see me again, that we were like brothers, that seeing so much disaster brought home to him how vulnerable he was, living where he did, and that he thus needed to be given money to move home… He got the money, and he did. The event in question was the sort of small flood that happens every few years but looks very dramatic. A couple of bikes were washed away. I’d spoken to this chap perhaps three times in my life, always about fairly shallow things.
It’ll then follow on to illness – Thankfully (for them) EDS is one of those conditions where the presentation is so variable that someone with it might have been diagnosed with almost anything beforehand. So, any news article on disability gets answered with “Back when I was diagnosed with [Topical Thing]”. Likewise, they can pick and choose which symptoms they’re having – If someone was in the news for doing something in a fugue state, then their EDS will come with seizures. If paraplegia or hemiplegia is in the news, they’ll have no function in their legs. If the topic is food, their EDS’s main symptom will be food intolerances and low appetite. Any suggestions that these problems either aren’t dangerous, or could be made better with a simple, cheap solution, will be met with equivocation. They need, clearly, a lot of money, and sympathy, and attention. And they need it now!
Depending on the crowd that they’re courting, they’ll also be LGBT. Usually they’ll appear to be straight and cis, and in a hetero relationship (or at least, always showing interest in the opposite sex) but the same thing will apply; Ah, they may appear to be a straight cis woman, but actually they’re a pansexual greyromantic demigirl! Thus anything happening to LGBT people in the news… Yep, you’ve got it, it may as well be happening to them, right now. They’re the ones that need the money, sympathy, attention… All of the above. Money!
Observation 1.2: Every action that they do will have intense personal relevance.
They’re not just eating an orange because they have an orange, they’re eating an orange because it’s the food that their Mother would bring them on payday. They’re not wearing jeans because jeans are comfortable, they’re wearing them because they have a deep grief about the shape of their legs and jeans are the only thing that ameliorates that violence. Someone elbowing them out of the way in the bus queue wasn’t just an arsehole, they did it for racist, ableist, homophobic, transphobic reasons, and it was personally deeply upsetting because it reminded them of the time that they were elbowed out of the way at a Lifechanging Event. Clearly, they are deeply traumatised and need your money!
Observation 1.3: They will convert to as many oppressions as possible.
If they can convert to a minority religion, they will, regardless of whether or not they actually believe it or keep to its precepts. They will identify as as many things as possible which don’t have strict boundaries or which have no bearing on their external actions (They’ll be grey-aromantic, or demisexual, or an indigo child, or an Unusually Sensitive Person, or an empath, or will self-diagnose with atypical autism, or an old soul, or a spiritworker…) some of the things will be real things, even if very loosely defined, some of them will be semi-real things, and some of them will just be pseudoscience and a way of saying “I am special and different”.
The points in (1) are to do with making links between themselves and as many things as possible, so that when later, they want to beg for money, you’re already faintly aware of a connection between them and the item that they’re begging for. “Oh yes, Floorbert needs £100 designer jeans, because jeans have something to do with his trauma” [clicks “Donate now!”] “Oh, Squamina’s great great grandmother was a Cherokee princess, she must be destroyed by [current event]… I’ll give her some money.”
Observation 2: They are constantly in desperate personal crisis.
Nothing is ever simple and no problem is too small. Every single stumblingblock in the road of life is the one that will kill them, immediately, and only your money can save them. Everything, arbitrarily, will need to be done NOW, has a short deadline, and if it’s not done by that deadline, all hell will break loose. They’ll phrase it in more and more pitiful terms as the deadline gets closer; “If I don’t get an electric piano by the fourteenth, I’ll have to wait a year to get into music school” “I need an electric piano by the fourteenth to fulfill my dream of being a musician, before I die” “My crippled hands are withering, I have until the fourteenth to get an electric piano and I don’t know now long I’ll last after that” “The thought of the piano, by the fourteenth, is all I live for. I am music, I am nothing but notes and sorrow”. They will manage to make even fairly colossal luxuries seem like the absolute least that a human needs in order to live a good life, and look how much they deserve the best possible life, with all of the hardships that the world has thrown at them…
The constant sense of crisis and urgency is what keeps their followers on their toes. At every corner, there is an opportunity to help this poor, struggling, vulnerable person! And quick! If you don’t they might die right now! Or worse, they might call you out as one of those sham-friends who does nothing but selfishly read their content and then never helps, oh woe. You owe them, you read their articles, you have to pay up immediately!
Observation 3: Their EDS only has the picturesque, dramatic symptoms.
They will never, ever, talk about faecal impaction. Not even to other people with the same condition. Or vomiting. Or the reality of losing days to pain, which is more accurately summed up by a pile of empty crisp packets and lucozade bottles than by a wan, gothic figure in a four-poster bed. They will suffer from dramatic fainting fits and seizures and crippling fatigue, and it will all be cloaked in a sort of maudlin romanticism. They’ll dwell on their own mortality, constantly. The care that they need will look more like a hurt-and-comfort fic than reality; A lot of soulful, tender bathing and eating their favourite meals in bed by candlelight, and not very much practical shuttling-around by friends, or having their laundry done by neighbours. It absolutely will not involve things like having to be helped to get to the toilet, or ashamedly admitting that their house needs a professional cleaner, or having to have a third-party take notes in medical appointments for them. They will have something like Victorian Novel Disease, complete with the implication that they are Too Good For This World and need charity to stay alive.
If they don’t, in reality, have EDS, they will repeat common descriptions of symptoms used by others in the community, or they’ll make up unusually florid descriptions which bear very little relation to reality. If they feel that someone is questioning the truth of their story as they’re telling it, they’ll change it – Saying that they’re too confused, or that they can’t remember, or that it’s all a blur from pain. They’ll usually never try to describe something that’s really hard-to-explain, like how a luxation feels, and will focus on simple, dramatic statements.
Observation 3.1: Their medical treatment will be all-or-nothing, and usually a caricature of EDS treatment.
Doctors will be baffled by their EDS. More baffled than is usual, I mean. They’ll only ever name-drop opioids or other drugs that hit the headlines when they talk about their medications, everything else will be “Something for migraines” or “Something for tiredness”. They’ll talk about their medications, especially morphine, as if they’re taking far more than is safe, and as if they are the sickest patient on the internet. They’ll really hammer it home – They’re taking MORPHINE, their problems are MORPHINE-LEVEL-BAD and thus they need your pity, sympathy, attention and most of all money.
Any doctor suggesting physio will only be suggesting it for racist or misogynist or fatphobic reasons, likewise any suggesting that talking therapies can help. This will result in more screaming online, more begging for money and attention (“To pay to see another doctor”) and more long screeds about how this is affecting them all much more badly than it’d affect the average person. And thus why you should give them money.
Again, they will seem to draw their words and descriptions from other people with EDS – They might parrot treatments and side-effects directly from others, or have *exactly* the problems in getting treatment that they expect (and that are dramatically satisfying) and no others. They will always face a deeper discrimination than anyone else around them, of course. Much like with their symptoms, if someone seems to be questioning them (and I’ve seen people claiming to get literally impossible treatments in wings of hospitals that don’t exist) they’ll claim either malpractise, that they’ve been lied to by their doctor and that this is just an extra indignity, or they’ll have another acute crisis atop their ongoing-crisis.
Observation 4: All of their wants will be framed as needs.
They will never just “Want” something, it will always come with a sad story and a hint for money. From something as elaborate as “I need a piano to play the lost music of my people! By the way, here’s a paypal link” to “I need a takeaway because the only food left in the house is boring”, everything will be framed as a need, and the opportunity will always be there for their followers to pay for it for them. There’ll usually also be a time limit in order to make it crisis-like; “Ugh, I need to buy a guitar within the next hour so that it’s here in time to play at Big Event that I’ve been looking forward to forever!”
There is no way that they can do any of these things without your help, and they are experts at coopting the language of equality and accessibility to make it seem like, in not paying for whatever it is that they want, you’re being racist, ableist, homophobic, transphobic… You get the picture.
They’ll also talk frequently about how it’s ableist and classist to “police how they spend money”. It is, of course, ableist and classist to say that disabled or poor people can’t have nice things, but when someone says “Please! Give me money for groceries or I’ll die!” and then a few seconds later says “Since you bought me food, I bought a £200 musical instrument on a whim to cheer myself up”, they’re doing something very wrong by misrepresenting the situation that they’re in.
This one is particularly insidious since so many of us are so open about our finances and are so close to complete destitution; We tend to expect that someone saying “I have no money” has no money. Plenty of us, upon knowing that we can afford food for the rest of the week, will consider ourselves rich. We’ll then share with others in the community. It’s a little galling to realise, after giving money to someone who is “starving!” that they don’t really mean that they have no food, just no food that they want to eat, when you yourself found the money to give to them by eating just plain rice for three days.
As much as there is no literal compulsion to give money to anyone who is fundraising, there is powerful social pressure. Scammers exploit that, they make themselves as pitiable and noble as possible, and wait for the money to roll in.
Observation 5: They will be deeply, unusually, personally fragile and helpless, even though they’re so brave and noble, and this will gain them protection.
This is related to how they keep their masquerade going. They make themselves impossible to criticise, because any tiny slight against them will make them do two things; First, they will be publicly devastated, shaken to their very core by the horrid accusations levelled against them. Then, second, they will whip up a mob against the person who criticised them. The other person will have criticised them because they’re “jealous of their success”, or because they’re ableist, homophobic, racist or transphobic (Again, see the utility of being ‘oppressed’ on many axes – The scammer can always pick an axis that the accuser doesn’t share), or because they’re just plain “hateful”. That’ll do two things in turn – It’ll make the individual critic, who may or may not have been about to expose them as a scammer, no longer a reliable or trusted source (After all, they attacked this poor fragile innocent!) and it’ll serve as a warning to anyone else; Don’t try to expose the scammer, they will make your online life hell. The number of scammers where I’ve spoken to other people who know them, and the people have said “Oh, yeah, I think they’re up to something but I can’t place *what*, and if I said anything I’d get doxxed”. All the while, even though small groups of people individually move away from the scammer, the scammer continues to draw in the more trusting and usually more vulnerable.
Finally then, what do we do?
I don’t know. Honestly, I have no fucking idea, but it depresses me and it’s ripping the community apart. I hate to say “Don’t trust anyone, ever, unless you know them, unless their story seems straight and stays straight for years, unless you’ve seen their face or heard their voice, unless you’ve got reasons, other than just ‘because they say so’ to believe them…” but I think that’s where we are, as a group now. Most of us, so close to all of us, are honest and when we ask for help, it’s because we’re desperate. But the few who don’t, who parasitise our community and our goodwill and the trust that we’ve worked for years or even decades to build up, have ruined it. I see a GoFundMe or a BuyMeACoffee link cross my desk now, and I immediately assume that it’s a scammer, or someone begging for treats instead of just trying to live out the week. And I know that hurts genuine people that need help – A few years ago, when I literally was eating nothing but broken rice and smartprice lemonade, I asked for help to get me to my family home to see my Grandmother for the last time. She’s not dead now, but she is gone, and strangers on the internet helped me to spend that last year with her before she vanished into her own head. And for that I’m forever grateful. And I am fucking enraged that people trying to make themselves comfortable by begging from the already-poor have made it more difficult for people in that kind of situation.
Maybe, all I’ll say is, take everyone with a pinch of salt. If they seem too tragic to be true, assume that they’re not true. If their daily lives fit a neat narrative arc, assume that they’re fiction. If they constantly need your money, and make you feel like you are obliged to give it (Including by the backchannel of “Nobody has to give! But we’d really appreciate it from those who can afford to spare the equivalent of a cup of coffee…”) question why that is.
I’ve rambled for too long anyway. Here’s a precis;
A: Scammers prey on our sense of community and our willingness to help each other.
B: Their tactics and how to identify them
B1) They will make everything about them, so that you will think of them often.
B2) They will be in constant, urgent crisis so that you feel that you have to help them NOW.
B3) Their illness will seem slightly unreal, as if they’re trying to tell a story.
B4) Anything that they want will be phrased as a “need” and will justify fundraising for it.
B5) They will be paradoxically vulnerable, and inspire people to gang up on their critics for them.
C: Take all requests for money with a grain of salt, especially if the above criteria are met.