By Suzanne Stewart.
I am writing today about a topic that I had hoped to never write about. But it has come to my attention and the attention of several support group leaders on Facebook; that there are imposters trying to infiltrate our support groups. This is a sad story and one that should never happen. Anyone who runs a support group for any illnesses, including and especially the chronic pain illnesses, needs to be aware of this situation.
I opened up Facebook a week or so ago, only to feel relieved in a way, that none of my support groups were affected by this “fake” person who pretended to have RSD/CRPS. This intruder into the CRPS community had befriended over 600 people on Facebook in over a period of just about 3 years. She started her own support group and then the worst happened. She gained the trust of many people who are suffering with the horrible chronic nerve pain of CRPS. She pretended to have the disease and pretended to have “cured herself”. This is unforgivable and preposterous to say the least. I had no idea about any of this until last week when all of the news broke. Her account was found out about and she disappeared.
She disappeared but not before taking with her dozens of trusted CRPS patients photos and videos. She asked them to make videos and send them to her and photos as well. She wanted these videos to be showing how they “worked through their pain and pushed through it”. She told several people in her support group that on the delicate and sensitive flaring areas of skin that has been diagnosed with CRPS/RSD; they should rub sandpaper! She wanted photos and videos of them doing this. Also, just to inform you that this practice is horribly wrong and could cause terrible pain, progression of illness and even worse, infections. She told a person to “pull on their RSD/CRPS riddled fingers until the pain was excruciating” and told them that this would “help them cure their RSD/CRPS”.
This “fake” was a well known figure in the RSD/CRPS community for these past few years. She had some telltale signs that I noticed right away, and thus the reason I vet my support groups very carefully. She had no real photos on her Facebook page and no family pictures or friends. Nothing “personal” stood out, from what I hear, on her page. She never showed herself in a video or a Facebook chat or video either. If anyone has ever watched the Television show called “Catfish”, that is one of the biggest clues to being a “fake” or a “Catfish” account. When you befriend someone on Facebook please be sure to check out their profile. Also, it doesn’t matter if they are friends with some of your friends, it can still be fake. Look for the signs of “realness” and of being a true person online. Look for achievements, and milestones, family and other photos (as I stated above) and don’t befriend anyone that you don’t feel comfortable with.
Please understand that most of the support groups are wonderful on Facebook. They are run by loving and caring patients living in pain also. Feel free to check out the group admins pages also. Look them up and see who they are and if they are shown as having a true Facebook account as well. Feel free to ask questions before you join a group, to see what the person believes about your illness(es). Check to see if you believe in the same ideas, or not? The people living in the pain community have seemed to me to be so caring and always wanting to help a fellow sufferer. I think this is where the story gets so dark, because this “fake” person tried to gain the trust of people who are kind and caring and suffering. We are all trying to make sense of these illnesses and the pain that they bring, how could anyone “pretend” to have something and then hurt people who’s trust they’d been given freely?
These are questions that I cannot answer nor fathom. This “fake” person was finally exposed and the authorities were called. There’s not much else anyone can do because she/he or they, closed down their Facebook account, their support group and took all of the photos and videos with them. Wherever they’ve run off too, we will never know. We don’t know if that person will show up again and now people will be afraid and looking around every corner for someone like this; wondering who to trust now? But if you are requested to do anything that you don’t feel comfortable doing, don’t do it. Unless you know someone online and have done a face chat video with them, or met them “in person”; don’t give away anything personal in the form of information, videos or photos. But please don’t give up on the support groups because there are many that are loving, kind and very helpful. I am so thankful that this person did not make it into my support groups. I remember the name and remember “her” asking to be in my groups and I felt that something wasn’t quite right. I declined her entry into my groups. I declined her friend request. I am just lucky in that respect, because many of my dear friends who are very careful; were still affected by this imposter into our RSD/CRPS community.
I’m concerned for the people who were hurt in my communities. This person was relentless in her “pushing” people to do things that were painful in order to give them false hope of a “cure”. She said that she herself had been cured and that all of the things she told them to do, she had done and this is how she got well. We all want hope and so these people were desperate for some kind of relief. With our pain medications being taken away weekly and more people being denied appropriate pain relief; I can see how this can happen. But just be very careful and don’t give up on the support groups but be selective in your choices.
The CRPS communities are left now with a bigger wound to heal. They feel vulnerable and duped. People are trying to wrap their heads around the idea that their photos and videos are out there somewhere and they don’t know where? Please know that if you were a part of this scam, it is not your fault. The imposter was very “good” at what she was trying to achieve. She was sly and deceitful in her endeavors to trick a community of pain sufferers. Please be assured that the Police have been alerted and Facebook security also has been told about this. There is not a lot that they can do except to try and make sure this doesn’t happen again. We all have to be a part of that! We all have to keep our eyes and ears open without getting too paranoid or hurting more people in the process. Don’t accuse anyone if you are not sure, because that’s happened to some RSD/CRPS patients as well. That has got to be a horrible feeling and it appeared that the people who were wrongly accused have regressed and so we have to be so careful not to be one way or another. Just be on your guard but not overly suspicious of everyone due to this situation.
Here is a link to another article written by someone else regarding this subject: http://www.blbchronicpain.co.uk/news/facebook-crps-faker-pretend/
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation.