In my previous article I told the story of a prolific member of the Facebook CRPS community who was recently exposed as a fake. In this piece, I explore the motivations that could drive someone to pretend to have a serious illness.
It’s possible that some who claim to be unwell may in fact be so, just not with the illness they purport to have. Munchausen’s syndrome is a psychological disorder where a person either pretends to be ill or deliberately creates symptoms of illness. A variant is called Munchausen’s by proxy, where an adult makes up fake symptoms or creates symptoms in a child. The condition is named for German aristocrat Baron Munchausen, who was famous for telling overblown and unbelievable stories.
Signs of the condition include pretending to have psychological symptoms, like hearing voices or hallucinating. Munchausen’s sufferers can also fake nebulous physical problems, like stomach or chest pain. Sometimes they deliberately try to get ill and they may willingly undergo multiple unnecessary serious medical procedures and operations. No-one really knows what causes Munchausen’s, but it’s suggested that sufferers have an unstable sense of their own personality and want to receive the unconditional support and caring from others that’s associated with being sick. It’s also quite possible that they enjoy manipulating others in a supposed position of authority, like doctors. When a sufferer’s fakery is found out, they’ll often vanish from one area and turn up somewhere completely new, claiming a new set of symptoms.
Catfishing: a very modern fakery
Having said this, I think it’s unlikely that ‘Susan’ the Facebook CRPS faker (not his/her real name) was suffering from Munchausen’s. Pretending to be someone else online is hardly a rarity, as anyone who’s seen the documentary Catfish (or the TV programme of the same name) will know. If you haven’t seen it then I recommend a quick Google; it’s astounding how many red flags people will ignore when they’re looking for love.
It seems realistic to suggest that most people who fake an illness do so, at least in part, for the attention and care they can get from people around them. Specifically pretending to have a rare disease to members of an online community for said rare disease seems more unusual though. After all, due to our own CRPS, none of us could pop round to take care of her. Susan played a very long and complicated game, befriending genuine CRPS sufferers and then pushing them to provide photos and videos of themselves in excruciating pain. What on earth could drive her to commit such an act?
Seeking a sense of belonging
One of the more innocuous potential reasons is that Susan desperately wanted to be part of a community. There are a lot of CRPS sufferers who are very active on Facebook, and the groups there (on the whole) are hugely welcoming and supportive. It’s the one place I have where I can go and be totally honest about my pain and my feelings and I value it hugely. It’s not beyond the realms of possibility that Susan desperately craved the sense of belonging and support that these CRPS groups bring. Sadly though, I think there are other darker motivations that are more probable.
As the dust has settled from Susan’s exposure as a fake, there’s naturally been a lot of conversation online about what could have driven Susan to act the way she did. One theory is that this person could actually be an investigator for lawyers defending CRPS personal injury cases. This theory has some credibility: it could explain why Susan was pushing people to do as much as they possibly could and then film themselves doing it. If Susan really was working for insurers, this could be a way of getting hold of incriminating video evidence, showing claimants doing more than they’d stated they could do in their witness statements. Pain conditions are very subjective and defendants will look for anything they can use to discredit claimants. There’s nothing more effective than a video of someone doing something they’ve said they can’t, like walking further than stated or washing the car with a supposedly useless hand. It’s why so many pain claimants are put under video surveillance.
I’m not convinced by this theory though, purely because of how long Susan spent as part of the online CRPS community and how she operated. If she really was an insurance investigator, you’d probably expect her to appear for a matter of a few months and target a small number of members. Susan did the opposite; the profile was live for at least 3 years and she interacted with literally hundreds of sufferers. Unfortunately, I believe her behaviour was triggered by something much more dangerous.
Be careful with social media
If you are pursuing a legal claim for the injury that led to your CRPS, however, you should be very careful about what you post online. Generally I would say try to avoid posting on social media about your illness or the legal procedure itself whilst your claim is ongoing. If you can’t resist, then before you press the button to post, reread what you’ve written through the eyes of your opponents. If it could be misinterpreted or taken out of context it could be used to bolster the defence’s case, so don’t post it; it’s just not worth it. Don’t rely on Facebook privacy settings either; it’s quite possible that a long forgotten friend of a friend could see your post and pass it on.
Also remember that closed CRPS support groups do vet potential members, but simply don’t have the time or resources to ensure that someone is definitely who they say they are. It only takes a fairly credible backstory for a faker to gain access to all kinds of information about your illness, as Susan’s story sadly illustrates. If you’re in any doubt, ask your lawyer for advice.
Meet the Devotees
One uncomfortable possibility is that Susan may have been motivated by sadism or devoteeism. Sadists find pain physically arousing. Devotees are those who are sexually attracted to those with disabilities. The excellent (albeit disturbing) recent BBC documentary ‘Meet the Devotees’ (available on BBC iPlayer at the time of writing) covers the subject through the eyes of a young disabled woman. Whilst some devotees claim that their particular preference for people with disabilities is no different to someone preferring blondes, it’s undeniable that for some it comes much closer to a fetish.
Devotees acquire photos and videos of disabled people doing things they find physically hard, and yes, sometimes of people in pain. Sadists are also known to collect films of people experiencing pain. I don’t really like to think about what they do with these videos, but it’s safe to say they are used for their own gratification. To me, this seems the most likely motivation; otherwise, why would Susan work so hard to gain such a large library of videos and images? As I stated in my previous article, Susan bombarded CRPS sufferers with posts and messages encouraging them to follow the regime she supposedly used to cure her own CRPS. The techniques she recommended would at best cause a huge amount of pain and at worst be extremely dangerous. She was always sure to include a request for a video of the person following that advice, the more pain they showed the better.
At this stage, I just can’t find any other explanation that fits the whole scenario. If you can think of anything then please don’t hesitate to get in touch because I would be over the moon to be wrong. Honestly.
How to spot a fake
Susan’s unmasking as a CRPS faker has been very damaging to individual sufferers and the CRPS community as a whole. We’ve all become a little less trusting and a little less open. I very much hope we never experience this scenario again, but I’ll close with some pointers on how to spot an online fake.
– Do a Google reverse image search. This can tell you if the photos your faker is supplying are being used anywhere else on the net, for example on other social media profiles. Either drag the image into the Google search bar and search as normal, or right-click on the photo, copy the URL and paste it into the search bar, then search as normal.
– Check their Facebook friends. Real people normally have mates from all over the place and all walks of life. If someone only has recently added friends who are only members of your support group then it should ring alarm bells about their veracity.
– Check posts from other people on their profile. Everyone gets an embarrassing ‘joke’ shared by their family every once in a while; if their Facebook wall is almost bare, this is a red flag that this profile isn’t a real person.
– If it seems too good to be true, it is. CRPS is a hideous disease and there are many doctors working to find a cure. If someone tells you they can cure you using their own weird techniques, don’t believe them. They can’t.
– Don’t lend them money. This tip may seem obvious, but fakers are clever and often willing to play the long game, building up your trust before they attempt to fleece you. Have a blanket rule that you don’t lend to people you don’t know in real life. That gives you an excuse to refuse without offending. Don’t feel guilty and don’t make any exceptions. Ever.
– Video chat with them. Although some of us may not like being on camera, an outright refusal to share photos and videos or communicate through Skype is a massive red flag. If they’re asking you for information and images but won’t reciprocate then something is very wrong here – walk away.
Obviously, none of these methods are fool-proof but using a few of them should give you a good indication if this person is real or not. It’s also very important to say that the vast majority of people you’ll meet online in CRPS or other support groups are absolutely genuine, very kind and extremely willing to help. Be careful but don’t shut yourself off. The internet has given me some great friends and some fantastic support; I know it can do the same for you.
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