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Crohn's Disease Forum » Support Forum » Vent Away » I Shared my Story and Got Burned


06-23-2013, 10:21 PM   #1
Mountaingem
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I Shared my Story and Got Burned

Ugh I know this was stupid of me, but I got to know a few people on a social media forum and slowly started sharing a few details about my experience with Crohn's as well as colon cancer. I never went into alot of detail because (this is just me) I tend to not discuss the details with people who do not have either disease. I felt safe because here everyone is always so helpful and supportive.

Two women who I befriended used little pieces of info that I've mentioned here and there to "prove" I was in fact lying based on what little they know of each illness from the internet. They said I didn't share enough details, it didn't make sense, etc as if I should offer my medical records up for inspection. I told them I don't discuss details outside of my support group but that wasn't good enough.

I didn't ask them for money or anything, I have no idea why they would respond this way. It is just so disheartening to go through this, especially on top of everything else*sigh*.

Lesson learned-now I'm determined to never share anything personal about my illness with anyone other than those here. No offense to anyone, but it is just too hard for me to trust my personal details with those who haven't experienced it either as a patient or caregiver.
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06-23-2013, 10:25 PM   #2
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What a strange reaction for anyone to have. Are we guilty till proven innocent now? Why would someone make up or pretend to have IBD? That would be an odd disease to pick for sympathy since there are much more debilitating diseases out there.

I'm sorry you had a negative experience but I think this is the exception to the rule. While nobody will understand what you are going through like those of us here, others can and do care and try to understand what it's like.
06-23-2013, 10:30 PM   #3
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Oh Jeanette, that is so awful. My heart goes out to you.

It wasn't stupid of you hun, you have every right to talk about your disease/s as much or little as you wish and in doing the very least you should be afforded is respect.

I am so sorry you were put in this situation. I know and understand that this has wounded you terribly but I hope you are soon able to overcome it because you deserve so much better.

In my thoughts,

Dusty. xxx
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06-23-2013, 10:31 PM   #4
afidz
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Other than on here, I don't really share my health information online simply for that reason. I am not going to subject myself to being judged when those who will judge know absolutely nothing of what myself or anyone else with this awful disease has to go through on a daily basis just to make it through a "normal" day
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06-23-2013, 10:32 PM   #5
Mountaingem
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They seem to think that I lied about the cancer diagnosis and the Crohn's because I never shared a lot of intimate details. I told them the meds I'm on, what more do they need? As for motive, I have no idea why they believe I would have for such a lie. Like I said, I never asked for money or gifts or anything so it's really puzzling all around.

My husband thinks it's to inflate their importance to others, but I can't imagine that would work. It is interesting to me though that they both admitted they don't have friends IRL and I would say this kind of behavior is at least one reason for it.
06-23-2013, 10:33 PM   #6
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I totally understand you're not wanting to share too much. Each time I get a new manager at work I wait to tell him/her till I get to know them and they see me for my work ethics not a sick me. I work just like everyone else, it's just that sometimes I need the bathroom a little more often than the others do!
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06-23-2013, 10:35 PM   #7
Mountaingem
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Other than on here, I don't really share my health information online simply for that reason. I am not going to subject myself to being judged when those who will judge no absolutely nothing of what myself or anyone else with this awful disease has to go through on a daily basis just to make it through a "normal" day
You know, I've read so many here say that very thing so often, I can't say I wasn't warned, you know? It isn't that I doubted the truth of their stand, I just got caught up in being "friends" I guess and as Dusty said, I wanted to share just a little.

I should have known better and from now on I'm sticking to your philosophy
06-24-2013, 05:20 AM   #8
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It comes down to its none of there damn business
06-24-2013, 06:43 AM   #9
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What a strange reaction for anyone to have. Are we guilty till proven innocent now? Why would someone make up or pretend to have IBD? That would be an odd disease to pick for sympathy since there are much more debilitating diseases out there.
I actually knew someone who made up having IBD! I had a "friend" who ended up being a pathological liar, and she invented having Crohn's. I'm not sure why she did that exactly, but she told me some really blatant lies near the end of our friendship. She said she was taking Remicade "every night" (I can't begin to say how many things are wrong with that statement), that she was taking a Cimzia inhaler (which doesn't exist), and she kept changing her story about her mom ("My mom has Crohn's" - "My mom is lucky she doesn't have Crohn's" - when I confronted her, she said, "Did I say my mom? I meant my grandma. She raised me so I call her mom." - Except I always heard her call her grandma "Oma"). She also had no idea if there is a cure for IBD or not. Her lies became super obvious over time, it wasn't just for lack of details. I confronted her on her lies and told her to get out of my life. She's pretty manipulative and will sometimes try to get in contact with me or will send me gifts (I return them all to sender).

So yes, I've been on the other end of things, and it sucked losing someone who I thought was a good, understanding friend. She didn't give a lot of details at first too and that was fine, I didn't push her. It was only when the supposed details started coming out that I realized she was full of it.

MountainGem, your supposed internet "friends" sound really manipulative too, I think you're better off without them! None of us needs the stress of false friends.
06-24-2013, 12:21 PM   #10
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Wow cat! I guess this world is even crazier than I thought it can be. Some people are really messed up!
06-24-2013, 12:42 PM   #11
Mountaingem
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I actually knew someone who made up having IBD! I had a "friend" who ended up being a pathological liar, and she invented having Crohn's. I'm not sure why she did that exactly, but she told me some really blatant lies near the end of our friendship. She said she was taking Remicade "every night" (I can't begin to say how many things are wrong with that statement), that she was taking a Cimzia inhaler (which doesn't exist), and she kept changing her story about her mom ("My mom has Crohn's" - "My mom is lucky she doesn't have Crohn's" - when I confronted her, she said, "Did I say my mom? I meant my grandma. She raised me so I call her mom." - Except I always heard her call her grandma "Oma"). She also had no idea if there is a cure for IBD or not. Her lies became super obvious over time, it wasn't just for lack of details. I confronted her on her lies and told her to get out of my life. She's pretty manipulative and will sometimes try to get in contact with me or will send me gifts (I return them all to sender).

So yes, I've been on the other end of things, and it sucked losing someone who I thought was a good, understanding friend. She didn't give a lot of details at first too and that was fine, I didn't push her. It was only when the supposed details started coming out that I realized she was full of it.

MountainGem, your supposed internet "friends" sound really manipulative too, I think you're better off without them! None of us needs the stress of false friends.
That's terrible. I've had someone lie to me about having cancer, it was crazy. She said a lot of the right things and never went into details either, but I totally get that not everyone wants to go into it so that didn't set off any alarms to me. It turns out she and her boyfriend was using the money they got from a charity to plan their wedding, can you believe that?

I'm so sorry you went through that. For your former friend to lie about something you are so familiar with to me shows she is unstable. When a person is a pathological liar, then they are mentally unwell and need help.

I'm not certain what reason they have concocted for this. These two women said there are "inconsistencies" but never specified what I was inconsistent about. I'm sure that's true, as I'm anemic, on high doses of pred and also take Dilaudid so my brain is fuzzy a lot of the time. I often mix up words and take long pauses when speaking or get confused about the date, etc. I had to quit driving, too, because I got lost not a half mile from my house and needed my husband to pick me up.

My husband said the fact that they were searching for stuff to "bust" me on proves they aren't really friends. I think they used that info against me, to be honest, just to mess with my mind. I'll not make that mistake again.
06-24-2013, 01:35 PM   #12
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Yeah, I do feel kind of sad for my former friend. She doesn't really have other friends (now I know why!) and I think she does have a lot of mental issues. She doesn't work, she doesn't really go out from what I understand (my husband & her husband are friends - that's how I met her - so sometimes my hubby updates me on what she's been up to). From what I hear, she just sits on the couch, eats, watches bad TV all day, and that's it. She has kids but she barely takes care of them so they're pretty messed up too, and she doesn't even clean and is kind of a hoarder, and I guess she's gained a lot of weight since I cut her out of my life. So it's really sad in one way how pathetic her life is - in another way, it's totally not my problem and I know I'm so much better off without her. So yeah, I have pity for her, but I'd never be friends with her again.
06-24-2013, 01:52 PM   #13
Mountaingem
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No, it's such a violation of trust, I would never recommend continuing on with such a one-sided relationship. Even though I certainly feel empathy for people, I also have learned to put myself first, too. It's just too hard to put yourself out there, share and make yourself vulnerable and then have someone stomp all over your feelings.

It's not anyone's responsibility to make things right for others, they have to be willing to get the help. I hope her husband will seek help for her if she is unable to do it for herself-it's not normal for anyone to be in that state.

I guess if people admit they can't hold onto friends IRL, that's a bit of a red light. I once heard Oprah Winfrey say that when people show you who they are, believe them, and I think that's a good way to approach it.
06-24-2013, 01:54 PM   #14
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I think your husband is right, Jeannette. What kind of sad, sick people would do that to someone? And all behind a computer screen? Definitely the type of 'friends' you can do without.
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06-25-2013, 02:51 AM   #15
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Mountaingem... Just click your heels together and say "there is no place like home!" Luckily you are in a safe place here and you know that for a fact if someone starts pulling that BS that we all got your back.
Cat- I am not sure what I would do if one of my friends pretended to be sick, not just with Crohn's, but with any disease. We all long to be healthy, to lead normal lives, and for someone to fake an illness is just a huge slap in the face. I know one things for sure, like you did, that person would not be in my life anymore.
I have heard a few horror stories of "friends" saying things like "your lucky you are sick, you don't have to worry about gaining weight" Or "your lucky your sick, must be nice not to have to go to work everyday" ...yup, we are the lucky ones. Who wants things like money and normality anyway?
***End rant now*** before I get to carried away!
06-25-2013, 03:24 AM   #16
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You forgot one afidz! How about, "I wish I were your size, I bet it's easy for you to find clothes and eat anything you want!" That's one I hear from my customers alot. Gotta love having to bite your tongue. Sometimes I wonder how I still have one for having to bite it as much as I do!

That's why it helps so much to have people who understand on here. Hugs to us all!
06-25-2013, 04:58 AM   #17
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I'm sorry this happened to you, Mountaingem.

I remember reading about how the Internet has led to a new form of Munchausen Syndrome (the psychiatric illness in which a person pretends to be ill) - apparently pretending to have an illness online is more common than you'd think. With the Internet people can research illnesses so they learn the symptoms and treatments, and then they join online support communities in order to get attention and sympathy. It's much easier to do than the original form of Munchausen Syndrome, as producing real symptoms and abnormal test results to fool doctors is far more difficult.

I guess it's possible the people who accused you of faking may have been deceived by someone else before, but either way they were out of line. Just because some people fake illness, that's no reason to start accusing others. And if someone really is pretending to be ill, they have a serious medical disorder and accusing them of telling lies isn't going to help anyone.
06-25-2013, 08:51 AM   #18
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This reminds me of a conversation I had with my gastro consultant during my recent hospital stay . I said that if only I had Munchhausens and hated work because I'd be having a wail of a time and really enjoying the whole experience. He thought it was hilarious!

Mountain gem - it's their loss and our gain- you'll have more time to spend on here!!
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06-25-2013, 12:33 PM   #19
Mountaingem
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I'm sorry this happened to you, Mountaingem.

I remember reading about how the Internet has led to a new form of Munchausen Syndrome (the psychiatric illness in which a person pretends to be ill) - apparently pretending to have an illness online is more common than you'd think. With the Internet people can research illnesses so they learn the symptoms and treatments, and then they join online support communities in order to get attention and sympathy. It's much easier to do than the original form of Munchausen Syndrome, as producing real symptoms and abnormal test results to fool doctors is far more difficult.

I guess it's possible the people who accused you of faking may have been deceived by someone else before, but either way they were out of line. Just because some people fake illness, that's no reason to start accusing others. And if someone really is pretending to be ill, they have a serious medical disorder and accusing them of telling lies isn't going to help anyone.
This is exactly my point, if someone is willing to go through all that trouble for attention obviously they are sick and need help and accusing them solves nothing.

I had a conversation with Gutlesswonder and it made me realize that the true origin of this whole mess lies in another area. I was helping them with several projects as a commercial artist free of charge. When I became too ill to continue, they turned on me. I guess once my usefulness ran out, so did their friendship.

The bad thing about it is my husband was like, "You might want to be careful helping them," because he knows I tend to offer help readily-he isn't saying it is a bad thing, just to be cautious. I should have listened to him, but bless his heart, he hasn't said "I told you so". *sigh*
06-25-2013, 03:03 PM   #20
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It's good to see you again Jeanette, long time no see,
so sorry you're hurt, but don't beat yourself up over this, thank God they weren't your IRL friends, but having said that, you can't deck them!
Let it go, you'll make yourself poorly xxxx
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06-26-2013, 01:44 PM   #21
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...apparently pretending to have an illness online is more common than you'd think...
Personally, I think that is going on on this board. I was happy to find this board some time ago but became disenchanted as membership soared and the "feel" of the board changed. I think there's some real bad information on here now, whether it be the anti-drug crowd, or the drug-pusher crowd. I also don't understand some people asking questions on this forum when clearly they should be smart enough to know to call their doctor. Things don't add up. Too many members, too many dumb topics, too many stupid questions.

Sorry to go off on a mini-hijack there, but I'm with you on the cautionary tale of sharing your story. I don't share mine often, it's usually only when people are like - "have you been sick?" or "why were you hurt?" - so you mention it, the arthritis, etc. Seems everyone knows someone who's mom's sister's friend has Crohn's - and you get the blah blah blah, Oh I didn't know it could affect your joints, then you have to yap about how it affects everyone differently, it's easier just to keep your mouth shut. At least that's how I feel most of the time.
06-26-2013, 02:14 PM   #22
Mountaingem
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Personally, I think that is going on on this board. I was happy to find this board some time ago but became disenchanted as membership soared and the "feel" of the board changed. I also don't understand some people asking questions on this forum when clearly they should be smart enough to know to call their doctor. Things don't add up. Too many members, too many dumb topics, too many stupid questions.
Well, I've been here for three years, and while I notice there have been changes in the crowd, everyone is here for information, and so I don't really consider topics to be "dumb or stupid".

If they need answers, that's what we're here for. I've had plenty of questions others might consider redundant but while the topic may be old hat to you and me, it's the first time for them and so it can be scary. I remember when I was first learning and I had a ton of questions and plenty of people were patient and answered them and I try to pass that on to others as well.

Also, when you're on pred or methotrexate or pain meds, the brain is foggy so it's tough to remember things, so that may also explain asking the same questions, or if a family is in an emergency and in need of an immediate answer it is easier to just post a question rather than search the boards for past discussions.

Many of us are fortunate to have doctors who are open to discussion but I would venture that the majority here are uncomfortable asking many of these questions or have a doctor that doesn't take the time to answer them in a satisfactory way. And truly, there is no substitute for first hand experiences from other patients to educate all of us.

I don't share mine often, it's usually only when people are like - "have you been sick?" or "why were you hurt?" - so you mention it, the arthritis, etc. Seems everyone knows someone who's mom's sister's friend has Crohn's - and you get the blah blah blah, Oh I didn't know it could affect your joints, then you have to yap about how it affects everyone differently, it's easier just to keep your mouth shut. At least that's how I feel most of the time.
I totally see your point here. I agree, it is easier to stay quiet at times, especially when you hear about a "cure" for the umpteenth time or someone thinks IBS is like Crohn's. When you're suffering, it's a lot to deal with. I really try to look past the initial annoying things (not always successfully, I admit) and see that the person is trying to empathize and be helpful in their own way, and that's always a good thing.

Thank you for sharing your honest opinion.
06-26-2013, 07:17 PM   #23
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So, semi-related, but this is really weird and I have to put it out there. I guess my ex-friend's husband got in touch with my hubby today. Somebody's been harassing ex-friend on Facebook, specifically about her faking Crohn's. She thinks I have something to do with it (I absolutely do not!). She's the kind of person to put everything all out there on FB and I am not - I didn't tell anyone except for venting about it anonymously on here when it happened (I made a post in members only and I certainly didn't name names or anything like that) and what I've said in this thread. So my theory is that she inadvertently put too much info out there to all her 1000+ FB "friends" and somebody got a bug up their butt about it. My hubby has a theory that somebody from the forum is harassing her on my behalf, which is ridiculous - I've never given out personal info about her, and only a handful of trusted people from the forum are FB friends with me or even know my real name, and I don't think anyone here would do something like that even if they had that kind of info. But I guess I'll put it out there because I really have no idea what's going on - if on the off chance anybody reading this is the person who is harassing my former friend, please stop it, because you're dragging me back into her drama, and I really don't want that.

/rant over. Sheesh, my former friend was all about the drama and it never seems to end, even though I haven't spoken to her in well over a year. MountainGem, I hope you can make a clean break from your former friends and not get sucked into any further drama!
06-26-2013, 07:28 PM   #24
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Oh my god-that's terrible. I don't know of anyone on here that would do such a thing. Everyone here is so empathetic, and even if she didn't have mental issues, no one would deliberately torment her on your behalf. Anyone who knows you at all knows you would never stand for such a thing.

In all honesty, when people put it all out there on FB, it truly could be anyone, anywhere. For her husband to zero in on you is narrowing the search quite a bit, I would say. I can't imagine why he would zero in on you. One of my former friends had a workmate who enjoyed "trolling" FB and Tumblr and saying cruel things to vulnerable people, so it very well could be someone like that.

I don't know what it is about the internet that brings out such cruelty-I guess since you don't have to say things to an actual person's face that just lets out the beast. Sorry you're going through this Cat-I'll do my best not to get sucked in. One of them keeps making cryptic remarks to my other "friends" but I've ignored them, but I have a feeling that by doing so she may ratchet up the behavior. If she does I'll turn her for harassment.

*hugs*
06-26-2013, 08:57 PM   #25
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That is awful Cat!

Hmmmm...she faked Crohn's, you have Crohn's...oh yeah, it must be you! Well upstairs for thinking and downstairs for dancing Einstein! Good grief!

I hope the crap that they are sending your way settles ASAP Cat and you can get on with your life without them in it.

Thinking of you,

Dusty. xxx
06-27-2013, 06:08 AM   #26
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Personally, I think that is going on on this board. I was happy to find this board some time ago but became disenchanted as membership soared and the "feel" of the board changed. I think there's some real bad information on here now, whether it be the anti-drug crowd, or the drug-pusher crowd. I also don't understand some people asking questions on this forum when clearly they should be smart enough to know to call their doctor. Things don't add up. Too many members, too many dumb topics, too many stupid questions.
I don't necessarily think asking medical questions implies people here aren't genuine. Here in the UK at least, the waiting time to see a doctor or get a test done is usually many months. I can't just e-mail or phone my doctors with medical queries. I even have to wait a week or two to see my GP, and her knowledge of Crohn's is far less than many on this forum. Official websites, like the NHS medical information pages, are very general and far from comprehensive. This is the best place I've found to go to for information.
06-27-2013, 08:00 AM   #27
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One of my very first posts on this forum was about sharing personal information with people. I decided to keep my illness to myself and it's worked out well for me. I use this forum if I need to talk to people who understand. I don't know you but you seem like an intelligent woman with a good head on your shoulders. Don't worry about what anyone thinks; especially a stranger on the internet. You don't need to prove anything to anyone. Additionally, you can't fix stupid so don't ever worry about ignorant people. It's a waste of your time and energy.

The truth is the truth regardless of what anyone thinks.
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06-27-2013, 08:13 AM   #28
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People can be bitches, especially females. I always try to stay away from people as a whole because they mostly suck.

On a side note: why would anyone invent anything wrong with their butts? There isnt much sympathy in it. Think about it......oh its so sad, breast cancer, so awful, might pop over with a casserole or something. Colon cancer? cancer in the butt? eeewww, so gross.


Thats been my experience anyway, people have so much more sympathy for every other cancer than they do for butt cancer. I dont know why, I spose because its considered a dirty stinky area or soemthing like that. Whatever.

I feel for you people who have been treated like crap by other peoples. You can always take solace in the idea that God is watching everything and He will remind those people of their nastiness when the time comes. And if you dont believe in God, dont worry. You dont have to believe in Him for Him to belive in you.
06-27-2013, 09:06 AM   #29
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Thanks guys, I appreciate the support. And I think I figured out how my ex-friend is getting harassed. I was scouring my facebook page last night, looking to see if I had posted any details at all on there. I didn't see anything on the public part of FB, but in the private messages, even though I had un-friended and blocked my former friend, all our messages from when we were friends are still in there - apparently PMs don't go away even when you block someone on FB. And we had discussed her lies in PMs just before I de-friended & blocked her, so there was a lot of detail in the PMs.

So, if it's all still in my PMs, that means it's all still in her inbox too. So now I'm thinking that maybe someone hacked into her facebook and read her private messages from me and is using that info against her. At the time we were friends, she had well over 1000 FB friends (but no friends in real life besides me!), and it seems to me that the more FB friends you have, the more likely you are to get hacked. Just my theory anyway, but it makes sense. I honestly didn't think it was someone from the forum who was harassing her as I haven't posted any identifying information about her on here, but I really had no idea, and this is kind of a relief that I think it's all to do with FB - the FB theory makes the most sense to me anyway. It was odd though because apparently the harassment has been going on for awhile and just happened again yesterday, which made me think of this thread - just a coincidence though I think! Hopefully she'll continue to leave me alone, I just need to stay out of her drama!
06-30-2013, 08:12 PM   #30
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
Cat: Geez, I cannot believe that your friend would lie about having a debilitating disease, how awful. Who does that?? I mean that is wrong on so many levels. Maybe she was an attention seeker and wanted people to feel sorry for her? I mean how pathetic really.

Mountaingem: I am sorry you went through that. People can be absolutely ignorant. I mean just because you did not want to get all into personal things with people about your disease did not give those people the right to judge you like that. What a bunch of anuses! Don't let them bring you down. Forget them, their ignorance is not worth your aggravation.

















Thanks guys, I appreciate the support. And I think I figured out how my ex-friend is getting harassed. I was scouring my facebook page last night, looking to see if I had posted any details at all on there. I didn't see anything on the public part of FB, but in the private messages, even though I had un-friended and blocked my former friend, all our messages from when we were friends are still in there - apparently PMs don't go away even when you block someone on FB. And we had discussed her lies in PMs just before I de-friended & blocked her, so there was a lot of detail in the PMs.

So, if it's all still in my PMs, that means it's all still in her inbox too. So now I'm thinking that maybe someone hacked into her facebook and read her private messages from me and is using that info against her. At the time we were friends, she had well over 1000 FB friends (but no friends in real life besides me!), and it seems to me that the more FB friends you have, the more likely you are to get hacked. Just my theory anyway, but it makes sense. I honestly didn't think it was someone from the forum who was harassing her as I haven't posted any identifying information about her on here, but I really had no idea, and this is kind of a relief that I think it's all to do with FB - the FB theory makes the most sense to me anyway. It was odd though because apparently the harassment has been going on for awhile and just happened again yesterday, which made me think of this thread - just a coincidence though I think! Hopefully she'll continue to leave me alone, I just need to stay out of her drama!
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