To any CRPS sufferer, it seems utterly incomprehensible that anyone would pretend to have the illness. A life with CRPS is full of constant pain, lost opportunities and endless torment; how and why could anyone feel the need to mimic it? What could they possibly gain from the deception?
As shocking as it may appear, in the past week a well-known figure in the busy CRPS Facebook community has been exposed as a fake. Their whole profile was a lie, with photos stolen from an unrelated account. The deception has left hundreds of sufferers shattered, unsure who to trust and feeling utterly betrayed. Even worse, this person was pushing a bogus ‘cure’ for CRPS, actively targeting sufferers with a suggested strategy that was at the very least potentially damaging and possibly extremely dangerous.
For the purposes of this article, I’ll refer to the faker as ‘Susan’: please note this is not the name they used in their profile. Also please note that despite the events I’ll relate here, I still believe that many Facebook CRPS support groups are wonderful safe spaces and I continue to strongly recommend them to any sufferers needing advice or just a sympathetic ear.
Susan played the long game; some CRPS sufferers had been Facebook friends with her for 3 years or more. I first became aware of her around a year ago, when she sent me a friend request. Her profile showed a young, pretty woman and as we were both members of several CRPS Facebook support groups I accepted her request. We never interacted directly, but I knew Susan claimed that she had suffered from CRPS for several years, eventually managing to go into remission from the disease, meaning that she was now largely pain free.
Generally, CRPS Facebook groups are closed, meaning not just anyone can join; they’re run by sufferers for sufferers and most admins ask potential new recruits to explain their personal relationship with CRPS and why they’d like to become a member. Answers aren’t thoroughly researched however, because none of us have the time, energy or skills to dig down into someone’s story and it was never considered especially necessary. For me, if someone said they had CRPS I tended to take it at face value; it’s such a rare condition that in my experience the only people who’d ever heard of it were fellow sufferers so I, like many others, was trusting. There was nothing about Susan, at this stage, that gave me any cause to be suspicious. I believed her totally. I was wrong.
Soliciting videos and photos
Around six months ago, Susan set up a new Facebook group focused purely on videos of people suffering with CRPS. It was positioned as a positive place, where those suffering with a flare or simply finding it all too much could safely and honestly reveal how badly they were hurting.
I’ve seen numerous screen shots of private messages and Susan was very pushy in attempting to get people to share videos and images of their CRPS, both on the group page and via private message. A large number of people responded; after all, why wouldn’t you? Susan repeatedly promoted the group as a safe space where you could support others struggling with CRPS simply by sharing the reality of your situation. If there’s one overriding thing to know about the CRPS community, it’s that they are deeply caring and incredibly keen to try and help anyone who’s suffering, so naturally many people replied to Susan’s ongoing requests for content. On the day Susan was exposed as a fake, the group had 657 members.
I chose not to share photos or videos of myself but not because of any concern about Susan’s motives; it’s simply that I hate appearing on camera. No alarm bells were ringing for me just yet; I thought Susan was exactly who she said she was and her motives were good.
A supposed ‘cure’ for CRPS
Shortly thereafter, Susan’s posts started becoming more aggressive. She began to write about how she “cured her own CRPS” by “pushing through the pain” and asked anyone interested in trying this strategy to join a new, ‘secret’ group. She wrote about how her technique would involve utterly devastating pain but she was adamant that it was worthwhile, given that it had “cured” her own illness and that it could do the same for anyone else struggling with the condition.
Many CRPS sufferers were concerned by this new development. Like a lot of others, I wrote to Susan explaining that, whilst it was good to work towards normalising usage of an affected limb, it certainly wasn’t possible for everyone. Even more importantly, I warned her that attempting to blindly “push through the pain” could drive sufferers into an unbearable pain flare and all the associated problems flares bring, like insomnia, nausea and vomiting. I received no response. At this stage, I didn’t have the slightest suspicion of how extreme her advice would become.
Details of the ‘cure’ emerge
This is where the story takes a very dark turn. Susan claimed to have driven her own CRPS into remission by “doing the most painful thing every day”. She wrote many posts and private messages daily, exhorting (and at times, practically bullying) others into following her instructions. I am astounded by the overwhelming number of posts and messages Susan was sending to CRPS sufferers; the sheer time and effort involved must have come close to a full-time job.
Last week, the details of Susan’s supposed ‘cure’ finally came to light and I am utterly horrified. Take a deep breath because this is difficult reading for anyone who understands the excruciating pain of CRPS. She suggested to someone suffering from a flare in her CRPS leg that she should rub sandpaper all over the area; according to Susan, this would make them “a better person” and able to cope with the CRPS without taking painkillers. She told a sufferer with CRPS causing immobility in her hand that she should “pull each of her fingers” as hard as she could, until she was crying with the pain.
Patients harassed to follow dangerous techniques
I’ve seen screenshots of a conversation where Susan approached a CRPS sufferer who also has a heart condition. The sufferer made it clear in conversation that she had to be very careful not to let her pain levels get too high, as extreme pain would make her heart rate rise dangerously. Despite this very serious condition, Susan still urged her over and over to “do what hurts your ankle most”. Susan even admitted that both doctors and physios would be dead set against what she was recommending and, shockingly, advised the patient to ignore any medical advice she was given for her CRPS.
Susan sent a photo (we don’t know whose or where it came from) showing a leg bent at the knee; she claimed that the patient in the photo previously could not bend her knee for 2 years. Susan stated that the photo was an image of the same patient after following her ‘programme’ for 2 weeks. Reading the message thread I am shocked by Susan’s hectoring; again and again, she would pop back up, badgering the patient to try her techniques. She just wouldn’t leave it alone. I’ve heard this same story again and again from other CRPS sufferers. And with each message, she made sure to demand a photo or video of the sufferer following her instructions and experiencing the devastating pain they would cause.
I don’t have the words to describe how much following this advice would hurt. I actually can’t properly think about it; my mind just won’t allow me to imagine it. I think this is probably obvious but for the sake of clarity I will make it plain: there’s absolutely no evidence, medical or otherwise, that following these instructions will do anything other than cause further damage to a CRPS area.
And it’s possible that damage could have very serious consequences; rubbing sandpaper on skin already weakened by CRPS could cause it to break down and become infected. There are cases of infected skin lesions on CRPS limbs failing to heal, leading to grave outcomes like widespread infection and emergency amputation. Physiotherapists will attempt to work with patients to gently desensitise and improve movement in affected limbs, but this is absolutely not the way to do it. Anyone suggesting such vicious, dangerous ‘treatment’ of CRPS is nothing more than a disgusting quack.
Susan claimed to have cured herself using these techniques. These are just a few examples of the messages that Susan sent to hundreds of CRPS sufferers. I’m not yet aware of anyone who followed her advice but I believe they must be out there. The pain of CRPS can be so severe, so devastating, so life-destroying, that people become completely desperate and will do literally anything to try and make it better. I have no doubt that there are some very despairing people who’ve been taken in by Susan’s lies and have hurt themselves very badly. It makes me want to be sick. It makes me want to punch the wall. It makes me want to see this faker behind bars.
In the end, it took little to expose Susan’s web of lies. Despite her endless pushing for others to share their own CRPS stories and images, she never responded with her own. Eventually, group members started talking to each other about Susan’s messages and sharing their doubts, leading several people to confront her, demanding that she disclose her own CRPS experience and justify the advice she was giving. Instead she disappeared, deactivating her account and vanishing into thin air. It emerged shortly afterwards that her profile pictures had been stolen from an unrelated account. We have no idea who or where this person is; we don’t even know if it was really a woman behind the profile.
The revelation of Susan’s deception has left hundreds of vulnerable CRPS sufferers including myself feeling abused, deceived and stupid for being taken in. Many people who sent her photos and videos are wondering where they are and what she (if it even is a she) is doing with them. People have shared their most painful, personal experiences with the best of intentions; everyone is bruised and less trusting which is sad for us as individuals and for the CRPS community as a whole. It is crucial to recognise that no-one is stupid or gullible for being deceived by Susan; she devoted huge amounts of time and effort to projecting a fake persona and tricking genuine sufferers into following her. That is her fault and hers alone.
Authorities are involved
I personally spoke to the police who took the matter very seriously, but without knowing who or even where Susan really is, there’s little they can do. If you have any knowledge or information about Susan’s real identity then I beg you to please contact the police wherever you are. Susan exploited vulnerable people, obtaining private images and videos and encouraging them to seriously self-harm. Right now, she’s simply deleted her Facebook profile. We’re living with the very real threat that she will simply reappear under another pseudonym and slowly restart her campaign. It’s a realistic and very scary possibility.
I’m sickened and shattered by Susan’s actions. They make no sense to me. What could anyone possibly gain from causing so much pain and suffering? In my next article I will explore what could possibly be the motivation behind Susan’s campaign of deception.