Stranger Among Us

Stranger Among Us

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.

Suzanne Stewart

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.

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 11 comments for this article
  1. Kimberly at 5:15 pm

    This is an awful person(s) perpetuating these cures and I find it repugnent.

    However, I take issue with the blanket description of people who maybe the perpetrators not having much photos or information. I don’t trust most people and therefore I do not share with many people. I also finally quit most of my support groups because there is no cure for my disease and I get so sick of waiting for the final ax to fall on the opioids resulting in the end of my life. But just because someone doesn’t share much with everyone does not make us all suspicious to be catfishing. I just felt I need to point out that if that is how you carefully scrutinize your groups, you could be missing people who are just afraid of having too much info out and available to be abused with at a later date,

  2. Angelica Heavner at 5:14 am

    People are cruel and some enjoy inflicting pain. They got to see the results of it everytime someone did it and videotaped it and sent it to them. Hopefully they also were not asking for money or things.
    We had that problem on a pg and it made me nervous. I did research along with another admit and realized it was false. We reported to police, fb, and every admit we could locate that they were apart of, to try to stop it.
    Hope no one was seriously injured from this persons cruel treatment.

  3. Rita KIMBEL at 5:48 am

    Seeing this reminds me to be very careful, what you see and believe on the web can hurt you mentally and now this. I follow the National Pain Reports, here, and feel this is a sound site for me.
    Thank you Suzanne for explaining this, I had no idea people could be that cruel to another person knowing their struggling daily.

  4. The pitfalls of FB: rae at 8:54 am

    I had to remove myself from FB & other social media because my non-supportive family has jumped on the opioid crisis bandwagon! They were coming down hard one of our relatives with cancer: saying “you need to stop taking this PM because you’re going to be addicted!” Seriously…i sat there & watched this w/utter disbelief & thought wow: they surely won’t have compassion for me or understand a CPP need for relief! I could not believe what I was seeing & hearing! Then one of them kept posting news clippings aimed at me on FB about the damage or danger of the ER meds for CP. I didn’t want to be part of an outlet for their mis-guided attacks or subject any CP groups I belonged to. I felt so alone & was made to feel like a low-life because my own parent disclosed my personal hlth info to everyone for the sake idle “talk!” I was approached (many times) @ family functions by “acquaintances” asking me why I take so much medication! I was so angry & hurt! My CP Dr. once told me: your government & society is crucifying CP patients. So heres a little addition to the subject about what else can happen to us on social-media by misinformed do-gooders! Oh & btw: these so-called informed family mbrs: cried at my bedside (2 months) when they were told to prepare themselves–I probably would not survive! …& here we are!

  5. Stevefrom MA at 6:41 am

    Back in the 800 number days there was a ” service” that charged people to phone in at a fee per minute and tell their awful personal problems and stories to…who knows? Of course, they also set up a separate 800 fee per minute line for people to call in and listen to awful personal traumas and stories. You know where they got those. Great business plan, awful people.

  6. Frances Kramer at 12:31 pm

    Thank you for bringing this to our attention and for your inciteful writing. I am not in your CRPS group, but I am in several other chronic pain groups for TN. I have seen a few posts that have made me very suspicious, but I blew them off as my being overly pessimistic, because I was having a “bad” day when I read them. From now on though, I will be more wary and check the poster’s own FB page for telltale signs the next time my “alarms” go off about a post.
    Thanks for all that you do for the pain community!

  7. Dennis J. Capolongo / EDNC at 10:25 am

    Yes indeed, the internet can be a double edged sword as this tale clearly demonstrates. I learned my lesson a few years ago at how harmful and destructive internet networking can be especially when strangers meet and exchange personal information in the hope of establishing a friendly but blind trust. This often leads to a false sense of security that can easily be used as a weapon if the relationship shatters for some reason in the future. Patient advocates such as myself have learned that respect for privacy for those we represent is paramount and that all personal matters must be held in complete confidence unless permission is granted.

    Chronic pain imposters are at first hard to detect as they often come very well camouflaged, but that false cover soon falls apart as suspicion grows among those in the group. In fact we have had nurses and even doctors posing as pain patients in an effort to sway opinions in our groups. Yet what I have found to be even more destructive is the immature jealous infighting, the petty bickering among the membership that often leads to hurt feelings, vindictive bitterness and false rumors. Some say this is unavoidable, yet I find it so unfortunate that as we all try and make our lives as comfortable and tolerant, why we chronic pain sufferers cannot just all get along without the use of negative emotions.

  8. Suzanne Stewart at 8:34 am

    In response to Kathy C’s comments. I honestly have been doing what I do (pain Ambasssdor, patient leader, health advocate, writer, blogger, awareness event planner & fundraiser; along with being a patient mentor for newly Dx RSD/CRPS patients) for about 10 years and before that, I worked with cancer patient encouragement projects. I’ve never had any trouble being believed. I’ve never had anyone use my comments to hurt myself or anyone else. My support groups are very safe, private and closed. No one can see anyone else’s comments and it’s against Facebook’s own rules to “share” by copying and/or pasting outside of these groups. The groups are support groups, therefore confidential and not allowed to be used in a court of law to “hurt” someone !(my sis in law is a lawyer). A support group for a medical illness in no way makes you therefore have a mental illness?? As long as you have good leaders in your groups and as long as your genuine and being true; I don’t see how helping yourself or others can hurt you. Obviously common sense what you should and shouldn’t post as far as personal info and the like

  9. Kahty C at 6:41 am

    Be careful; folks. This is not an unusual situation. A family member of mine used some out of context comments to use in a Court Case on an Estate Matter. According to the Courts Posting on any of these types of Groups, is a sign of “Mental Problems” or worse. There is no low to low for people when money is involved. Large Companies, adn wealthy Individuals have methods to monitor their Online activity, while any of us don;t even think we have anything to lose. The current “Opiate Debacle” has made all of us look like a bunch of whiners, attention seekers or even Drug Addicts. I don;t have CRPS, I actually have Imaging of my Spinal Condition, but that did not make one bit of difference.
    There is also the monitoring of these Sites by people in the Pharma or Medical Industries. Information gleaned from these Posts can be sold or used to undermine Patients Groups, or any kind of “Advocacy.” If we look around, we don’t have any real Advocacy, it has been undermined by the Industry. I am even questioning the “Tell Your Story Narrative.” The frustrated and desperate people who vent online can have their stories distorted and made to appear as if there is another motivation. There is a lot of money at stake for the Industries that are peddling Snake oil or other nonsense. If we follow the current Popular Media about any subject at all, we can see very clearly how even the simplest Online Statement can be distorted to give the appearance of whatever the current false narrative is.
    The Medical, Pharma and Insurance Industries have a lot to gain by discrediting any kind of Online Conversations. Those of us who foolishly thought that the Internet would have brought together Information fro the betterment of Humanity have been sorely disappointed. Online Searches have even been distorted not only with advertising, but anything that helps the Industries maintain a gullible public. We have not seen any real “progress” on a wide number of issues. The Media runs a narrative about progress, and innovation,, but if we look close, it is all Jargon.

  10. Maureen at 6:35 am

    That’s a sad story to read, but it sure is a real one! Sounds like a sadist, to me.

  11. M.Billeaudeaux at 6:01 am

    I am so shocked to read the story of the person who pretended to have a chronic disease. For us who suffer daily, this is extremely discouraging.
    What I am very much concerned about today is the war on opiod drug abuse. While this is a very important issue to attack, the fear of our much needed medications and our physicians being unable to prescribe what works best for their patients is concerning to me. I well remember years ago the fight we had to engage in to obtain patient rights and the right to live without pain. I encourage everyone to write to their congressmen as I have and to Senator Price and the president. Believe me, once the government beings to take away your medicine or prevents your physician from prescribing your medicine, we all will be sorry. Be proactive and not reactive with your chronic pain issues now. Thank you

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