I wish to convey a word of caution to all sarcoids sufferers who are members of this web site along with their friends and family members. I experienced a very unfortunate situation last night as I agreed to meet someone I met on this web site over dinner at a local restaurant. This person posed as a fellow sarcoids sufferer who was looking for a “friend” in her local area. As I was also looking for the same thing, I agreed to meet with her. I had been very excited about meeting her and talking about sarcoids with someone who possibly could understand the fear, anxiety, physical pain and suffering I have, where others may try to understand but don’t. Half way through the dinner, when she spoke about the medications she was taking, I asked if any of them were for her sarcoids. That is when she reluctantly confessed that she does not have sarcoids. I was shocked and very hurt. I felt and still feel that she exploited me and took advantage of my vulnerability. I wanted to just get up from the table, pay my bill, and walk out. But, for some unknown reason, I just sat there. I couldn’t wait for the meal to be over and I sure as heck didn’t order desert or another cup of tea. So, please be aware that not everyone on this site is who they say they are and please be cautious if you agree to meet with someone.
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I was victimized by a member of this web site!!
- By LucyLue
- Posted January 24, 2009 at 8:29 pm · 63 replies
- In Family and friends
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Anxiety Cancer Pain Lupus Fibromyalgia Sarcoidosis Mental health
63 replies
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- By SarcoidPrincess
- Posted January 24, 2009 at 11:02 pm
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Thank you so much for your warning. I'm so sorry you were hurt. I'm also greatful you met some where public!
Be safe!
SP:)
- By shadowtoonces
- Posted January 25, 2009 at 12:15 am
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Wow...that's crazy....we may be sick, but at least we are not that sick.......thanks for the warning......take care and praying for us, Dawn
- By Frankie-Bear
- Posted January 25, 2009 at 2:19 am
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That is horriable. I have to agree with Dawn we are sick but not that sick. That is really bad. It gives all new meaning to meeting people. I hope that you don't let it get you down and that you keep trusting and hopefully you will find that friend that you can share the second cup of tea with that will truly understand you.
Frankie
- By Cloudnine
- Posted January 25, 2009 at 4:10 am
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I would be so disturbed by that. I don't think I would have been able to just get up and walk out either though, I think I would be in shock.
I wouldn't wish for this disease or wish it on anyone. I believe I would feel disrespected if this was to happen to me. Some of us already feel alone with this illness. I have support, but I don't have a real live person, I can see and, I don't know... hug that knows what it is like to be me, in a way. (I hope that makes sense)
Email buddies are really good and there is voice chat programs that you can talk to other people through the computer and it does not cost a thing. These might be the best options in the beginning.
I think a very sick person would only want to be part of this tribe, some of us are here by default. Meaning if we had a choice, we wouldn't belong. (I know we have to choice to belong, but I hope this point gets across properly)
There is a fairly new issue for health support sites and that being Munchhausen by Internet. I did some research on it, trying to understand if it is common or not. Most people on sites such as these are honest. There are some that aren't, as you have found to be the case.
There is tips and clues. I don't want to touch on that because I don't want anyone to feel that I am pointing fingers, because I do have a lot of respect for this community and I understand it is tender. I also don't believe that anyone has been dishonest with me.
I to agree with Dawn and Frankie. Yes, hopefully you can find a person, the friend that you get to hug eventually and be able to trust. The true friend as all should be.
- By gonenatural
- Posted January 25, 2009 at 6:29 am
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I am so sorry this has happened to you and I agree that this should be reported so she can not be near anyone on here again.
My best thought was that you met in a public place, a great safety zone.
I would have felt just terrible talking about what ever and sharing on for her to turn and tell you she isn't sick, well, sarc sick.
I probably wouldn't have known what to do at that moment either except eat and think of what was just stated to me.
Good luck in the future
- By priscurl
- Posted January 25, 2009 at 6:48 am
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Hi LucyLue,
I'm sorry you were so disappointed. However, not everybody on this site has a confirmed diagnosis of sarcoidosis, some are only suspected of having sarcoidosis. I met someone who believes she has sarcoid, and so her blood tests, in my opinion, suggest this. Her doctors are still totally in the dark and she is getting nowhere with them. We have met twice and it has been a very positive experience. Those who don't have a diagnosis of sarcoid also have pain and anxiety, often far worse than people who have been diagnosed, and, in addition, they are often victimised by friends and family who think they are putting their illness on. These people are far worse off in my opinion than 'the diagnosed'. Think back to before you were diagnosed. Just because someone does not take the same medications does not mean that they don't have sarcoid, and if they have not been diagnosed, they won't be on sarcoid medication anyway. I am not saying that people are not out their who will exploit you. You should (and are right to be careful) but if the person didn't make off with your money, credit cards or get a free meal, perhaps you should reassess the situation. There are lots of people here who only think sarcoid is a possibility for their unexplained medical problems. 'Not having sarcoid' does not necessarily make the other person 'bad'. If no criminal act was committed, I don't see what harm was done other than the fact that you were disappointed by the person who arrived. I suggest next time, you spend longer vetting people, and chatting with people, before you decide meet them. That way you won't be as disappointed when they 'don't have sarcoid'. But thanks for warning others.
Pris
- By pamk
- Posted January 25, 2009 at 9:53 am
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I agree with Pris. Unless some type of criminal activity was attempted I don't see "victimized" as the term I would use if this had happened to me. It doesn't mean that person didn't have similiar needs as you as far as connecting with another suffering soul. It took years before I was given the diagnosis for sarc and even now that I have been confirmed thank goodness I don't need to be on medications for it other than eye drops.
I think when we have expectations of others we often get disappointed. That person may have needed to connect with someone who was going through some of the same symptoms as much as you did. The only difference is they did not have the same diagnosis. Maybe they didn't have a diagnosis yet.
Yes I agree we have to be cautious when we meet anyone through the internent for any reason. It was good that you met in a public place. Until we get to know that person we have to be prudent on what they might know about us.
I have met a wonderful friend in the my area through this website. We see each other occasionally for lunch and we have a great time. We don't talk about sarc the whole time. We have other things to talk about as well and are sarc experiences are much different from each other.
I treat people with chronic disease and pain issues and even though their diagnoses are different their suffering is not. Their desire to connect with others who feeling sick are also similiar. You remind us that we all need to be cautious when meeting anyone in person through the internet through this site or any other one. But "behold the turtle who never gets any where unless he sticks his neck out." This is my favorite saying. Take care.
- By momof10
- Posted January 25, 2009 at 10:06 am
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I hope Pris and Pam are on the right track.. Do you think now after going over the evening that maybe she just needed to vent to another going through some of the same symptoms we have? Or did she totally creep you out and make you feel you were being victimized? I'm glad you met in a public place and also glad you shared your experience. I have chatted with a women who lives pretty close to me and my hopes are that we will meet eventually and share dinner or lunch maybe. I hope your experience doesn't deter people on this site from reaching out to each other. I also hope it does keep us being cautious when we go to meet a stranger!!
Thanks for your story , I hope your feeling better about it. Do please report it to teaminspire if you feel you need to....
take care,
becky
- By clcsj
- Posted January 25, 2009 at 10:39 am
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I also want to meet people that are going through the same thing that I am going through. I guess one of the criteria should be doctors reports and lab reports to show that they are telling the truth. There is always a risk when you meet people that you dont know.
- By msr71
- Posted January 25, 2009 at 11:05 am
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Lucy Lue,
I am so sorry to hear your faith in others was shaken. I commend you for being brave enough to meet up w/ someone you met on the internet period. I don't think I would be as open to that. I hope Pris is right also. Did you ask her why she said she had sarc? Maybe she did think she had it or was at one time misdiagnosised?
Hopefully there is an explanation you'll be able to get to her situation.
- By Kathleen_Geaghan
- Posted January 25, 2009 at 2:34 pm
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Lucy Lue,
I am so sorry for you. We are hurting enough without someone making us feel strange about talking on this website. Maybe it wasn't meant like that but I think I would have felt the same way as you. You are in my prayers. There are many of us out here that aren't like that. Hugs, Kathy
- By 42many
- Posted January 25, 2009 at 3:06 pm
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Jeez! With kids who want internet access, I warn them but this story gives me the heebie jeebies...
Munchhausen by internet is horrific and kind of funny, in a twisted way...maybe it's just me.
Think about what you would tell a child, though.
I agree with a few others who point out the dangers of trusting anyone you "meet" online.
So sorry this lady creeped you out but do not put yourself in such a very dangerous position again!
I can only hope you did not share personal information with her! Maybe you should file a police report in case she is a stalker. Cyber stalking I have heard of, not so much the Munchhausen's. Crazy world some days.
And you can meet with real humans that deal with chronic illness in the safe environment of a hospital, etc. It may not be the exact illness but the feelings are sometimes identical. But be warned here, too...some of the folks you meet with may want to latch on for some really odd or not so nice reasons. Good to be reminded about protecting ourselves.
- By Cloudnine
- Posted January 25, 2009 at 3:45 pm
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There is support groups that are for chronic illness in a lot of communities. I used to belong to one that was all women. It was chronic illness and pain group. We didn't all have the same illness, but it was interesting, because we could relate to what each other felt and were going through.
There was some people in the group that were "space invader", "Clingons", etc. I am a magnet to these kind of people so that can be draining. We would meet for lunch or ice cream. The rules were that you could cancel with no excuse because when you are chronically ill, stuff happens. Outside the group people could form friendships with each other, and it should not make the others in the group not feel supported. We did it for something like 2 years and met once a week and then the group also met with the doctor that ran the group every 2 weeks.
Some hospitals have these groups also. Also at the local hospital sometimes they have speakers that come in and discuss chronic illness. As a group we would go to this as well.
I am still friends with all the women from the group even though we no longer meet in the same schedule as we normally met. Some people got better, and they didn't need the support of the group any more. They still remained friends. We grew as a group, past the issue that brought us together.
- By booch24
- Posted January 25, 2009 at 5:44 pm
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Please report this person to Team Inspire. Hopefully they are reading our discussions from time to time to pick up on problems.
You also need to stay in touch with the people who you are comfortable responding with and not all are as upbeat as many of us would like. We do not need to be dragged down.
I try to find people, although they have problems, can also discuss other things that are more positive.
Think positive and stay well
Boo ((*_*))
- By bigjoe
- Posted January 25, 2009 at 6:13 pm
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Lucy,
I am sorry you felt betrayed. I agree with priscurl's comments... Try to stay positive.
Blessings,
bigjoe
- By sweetpeach
- Posted January 25, 2009 at 8:01 pm
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thanks for the advice and I agree with bigjoe. I try to stay postive and i do keep it real.
sweetpeach
- By Tawney
- Posted January 25, 2009 at 8:58 pm
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Hi LucyLue
You said your companion confessed she did not have sarcoid but does she believe she may have it although doctors have not confirmed her opinion? What is her purpose otherwise in conversing with us all here?
I'm the person Priscurl met up with but I have freely said all along that I do not yet have a diagnosis. Out of the doctors' "maybe" list and from my pathology results and from all the symptoms I have in common with people here, I truly believe that sarc is the most likely problem for me.
I'm grateful beyond belief to all the people here who have accepted me despite my lack of diagnosis and my "maybe" status and who have responded to my posts and shared information and frequently made me laugh.
Priscurl has been great to me. She's given me so much information that helps me steer myself through the muddle doctors have me in and has helped me make better sense of my pathology results. Should I have a miraculous recovery (wouldn't that be nice!) or find myself with a different diagnosis, I've found a new friend through this website who I have much in common with despite illness. We're planning to go to some dog shows this year as Priscurl has pedigree dogs and I have an Irish Wolfhound and love seeing more of them.
This site has been nothing but a positive experience for me. Hope you stay positive about it all. It's hard to reach out but people here meet you half way.
- By Krissy
- Posted January 25, 2009 at 9:18 pm
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I have made friends with people on this website who do not have Sarcoidosis. There are other illnesses here with Inspire as well. Did this woman show that she had a hidden agenda other than friendship? She mentioned medications, so she must have some health problems. You would have been disappointed that she did not have sarcoidosis. I am looking forward to actually meeting another sufferer face-to-face. I understand how isolated that you must feel. If she only suspects that she is a sufferer and still does not know, it is actually worse than knowing. I have only had my diagnosis around 3 years. Knowing what is wrong me has made it much easier to cope. Most importantly.........did you get stuck with the bill?
- By LucyLue
- Posted January 26, 2009 at 12:29 am
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Hello everyone,
Thanks so much for your comforting words and prayers. This lady really led me on during our online conversations. We talked about how each of us was looking for someone in our local area that we could talk to and share our sarcoids experiences with. We talked once on the phone prior to our dinner and talked about how our spouses were concerned that we found each other on the web and now we were planning on meeting in person. We talked about how obscure this “sarcoids” web site is and that we didn’t think there would be too many people that would want to be a member of such a site if they didn’t have sarcoids, or a similar disease, or be a family member or friend of someone who has the disease.
At dinner, her very first question was “What does your husband do for a living?” which I actually thought was an odd first question, but being the trusting person that I am, I actually told her. I now wish I hadn’t. My only saving grace is that my husband and I don’t share the same last name, so finding him would be very difficult for her. Other than talking about being overweight, she never talked about any particular illness. I told her that I am over weight because of the steroids that I’m taking for my sarcoids. That’s when she told me of the 3 meds that she is taking. None of them sounded familiar to me so I asked if she was taking any of them for her sarcoids. She said … “Oh … I don’t have that”. I asked her … “Then how did you find your way to the sarcoids site?” She said she was just searching the web, came upon the site and thought she would join.
I never left any of my personal belongings unattended, so she never had the opportunity to take anything. I don’t know if she would have … but I didn’t take the chance anyway. And … no … I didn’t get stuck with the bill. But trust me; at one point I honestly thought I was going to get stuck with it.
She definitely gave me the creeps, and I did feel violated. I was perfectly clear on the fact that I was looking for someone who was going through what I am going through and she definitely led me to believe she was suffering from the same illness.
I wish I had asked her why she did this to me, be I couldn’t muster up the courage. But, not to worry. Better days are ahead. I still have all of my “web friends” to talk to and I am so grateful for that!!
- By msr71
- Posted January 26, 2009 at 6:57 am
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Hi Lucy Lue,
I agree, quite creepy! I hope you will consider reporting her to the inspire team here.
Michelle
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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