I've Just Been Cyber Bullied!!!Just Tell Me What You Think?

[Elaine H]

Hi CWE and Bernard

Wow, I feel like I'm home I really do!! I haven't been on for a while for a ton of reasons, but I've been dragged into a couple of Facebook websites re epilepsy, and I just wanted to kind of warn you guys on here, or see if anyone had experienced the same hostility as I just have?

I've been playing around with Facebook, and I've found myself getting uninvited e.mails from a group called United Kingdom against Epilepsy, and another called something like Epilepsy Fighters Speak your mind (which is a contradiction in terms) as you are certainly not allowed to speak your mind and when I tell you I was shot down in flames when I did, you'll probably not bother going there. Yesterday, I had an e.mail from a guy asking if anyone else had experienced discrimination in employment, if you know me on here, you will know that I was only too pleased to write back and support the bloke, having been booted out of several jobs, this is where madam smarty pants comes into it, sticks her nose in, and gets really rude to me quite personally, me being me, a crazy horse without Keppra, I fired a few rounds into her and she got both barrels, no swearing though, but what she wrote back was disgusting, and my challenge about it being a "speak your mind" site went unanswered, we are all adults, discussing a common denominator, and she wasn't even in on the conversation, I was so angry, I did have some support from others on there, but after a very tearful day anyway, I deleted them all and went to bed.

A few of the guys I've met on here over the last few years don't bother with these Facebook sites, saying that they are set up by "Joe Bloggs" people claiming to be professionals, any old so and so can set them up, and they are feeling sorry for themsleves, don't like any retort from anyone, and I really just wanted to warn anyone who hasn't tried them yet not to bother? I've been telling everyone about CWE, you really can talk about what you want on here, I don't think I've ever upset or offended anyone have I? I know I can be a gobby cow, but that's the Jock in me and as I said, Keppra hardly makes you sit back and blush does it folks? Buut come on, you all know that we have to get out there and talk about epilepsy, on the UK site, I suggested that we try and get celebrities with epilepsy to come out of hiding during Nat Epilepsy Week and Purple Day, and wave the flag too, they accused me of two things, trying to plug my book, which is a long way from being typed up yet, and of slagging off all the hard work people do across the world at the moment during these two dates in the epilepsy calender?!! I just couldn't believe it.

I'm going to drop into CWE a couple of times every day from now on, it's an intelligent well put together Forum, and it's for people with a condition called epilepsy, and we all want the same thing, to rid the world of the unbelievable stigma that exists towards us, I still do not have a job though!! Hope you are all ok though?

Lotsalove


Lainey
XXXX

 

[Loopy Lou]

Yeah, i've come across a few groups like that on facebook. Some i joined and then decided not to bother. One of them even changed its name to something like "me and god", and then wondered why it's members were upset *head scratch*

Just goes to show, there are some idiots out there and i've found that some who promote free speech really mean "Well, say what you want so long as you agree with me"

I think i'll be sticking with this site for now

Good to see you typing here Lainey! I really hope you get a job soon. I'm on shaky ground with mine at the moment, after getting my latest doctors note it could go either way. I could either have a lot of restrictions removed or be told that i can "no longer fulfill my contract". Been looking for new jobs like mad just in case, but no luck so far.

Take care! x

 

[Cint]

Good to hear from you, Lainey.

The only group I've joined on Facebook in regards to seizures is our local Epilepsy Foundation group, which keeps everyone informed of the events in our area and we can all add our input and questions.

I'm sorry you had such a bad experience, but unfortunately, there are lots of weirdo's out there who like to play with people's minds through the internet. I will be looking forward to hearing more from you now.

Keep your chin up.

 

[Nakamova]

Hi Lainey, nice to hear from you! And sorry about the stress you've gotten from other Internet E locations. The Internt can bring out the best in people (like Bernard), but unfortunately it can bring out the worst too.

 

[Bernard]

Hi CWE and Bernard

:hello:

... if anyone had experienced the same hostility as I just have?

It happens a lot. It's pretty hard to establish and maintain (kudos to the mod team) the friendly and open community ethos that I think we have achieved here. Every discussion community is different - has it's own flavor if you will - and people will gravitate to the ones that fit them best. To each their own.

... I've been playing around with Facebook,

I personally don't care much for Facebook. I created an account there to give CWE a presence, but I have pretty much abandoned the effort to keep up with it. I was wasting hours wading through and deleting requests for all kinds of inane BS.

 

[Endless]

Lainey,

I'm so sorry you were attacked like that. Stressful. Very stressful.

I stay away from facebook altogether, both because you don't know who sees you or who you are dealing with (even despite security settings), and facebook collects your private, personally identifiable information and sells it to third party corporations. Even when you "like" or "dislike" something in the general internet, it adds to your profile that is then sold to online companies, as it does when it tracks where you go on the internet. Facebook also has a dismal record when it comes to ethics and transparancy in it's dealings.

Anyway, a safer bet if you want to avoid this kind of thing is to stick to established, moderated forums. It doesn't reach nearly as many people, but there is far less hassle.

 

[stephanieholly]

How rude of them! Facebook is getting a bit hostil at the moment with regards to everything! You join a group because you like Lady Gaga and there are people on there who dont know each other full on swearing at each about which song is best. its pathetic!

I havent joined any facebook groups regarding epilepsy however I did join a UK based forum and I would not reccomend it to my worst enemy! At first the people seemed lovely however I noticed there was a deffinate "leader", not a moderator but a member who's opinion was always the only opinion allowed. He also seemed like a lovely person and I have to admit many of the things he said I did agree with regarding Epilepsy but he bagan saying things about other forum members and how they were lying and attention seeking and didnt even have Epilepsy which I thought was very odd considering he very influencial and everyone looked up to him.... then I tried to log on one day and discovered myself and 4 other members had been banned. The management team on the forum contacted me and said that the "leader" member said we were being rude and horrible to other members however when I got hold of another forum member (who I had aparently been bad mouthing) via facebook she said that he had told the forum that I decided to leave because it was boring and that she hadnt reported me?

I felt very hurt by it so I can understand what you mean xxxx

 

[maureen]

You are absolutely right Elaine!!!! I joined a couple of Epilepsy groups on Facebook, and after a while have deleted them. I find this group to be MUCH MORE HELPFUL!! No one yells at you, tells you that's a dumb question, or takes part in back and forth conversations that I don't really want to be a part of anyway.

Bernard, THANK YOU for your efforts at keeping this site on track. I'm sure without you it would go the way of many other sites. KEEP UP THE GOOD WORK!!!

Elaine, ignore those other sites, stick with us, your friends!

 

[Elaine H]

Hi Maureen
Great to hear from you mate!! Can you tell this technophobe how to go about deleting these sites as everytime I switch the computer on I have about 30 emails from these idiots, they write to each other everytime they pass wind??!! I would appreciate it if you could tell me step by step so I can get rid of them once and for all?

Many Thanks

Lotsalove

Lainey
XXXX

 

[Day]

Hi Elaine.

Sorry to hear that some morons have turned to the subject of epilepsy to spew their ignorance and stupidity. Some people actually just wanna pick a fight and sit back and chuckle like they're proud of themselves for hurting someone else on the other side of the interaction. Sadly, I've known people like this, and I think they were trying to make someone else hurt, because they were in such emotional and mental turmoil themselves. In any case, they were in the wrong.

I would advise, however, to put all of the emails you received from anyone that had to do with any of these sites in your 'junk' email folder. That way they won't be in your incoming emails, and they'll go directly to 'junk'. If "madam B-----" is bold enough to say the things she did, I wouldn't put it past her to send you a virus or something.

On another note, thank you to the mods for keeping this place straight, because I've never found any site where I can even say 'I have epilepsy' without everyone either acting like I'm dying right then, or like I'm 'faking it' or 'using it as an excuse'.

 

[Elaine H]

Hi Lou
Thanks for that, it's just so good to know that it's not me, I really was so upset, especially when she referred to me as a "specimen" I found that disgusting!! Anyway, I didn't ask to be sent the e.mails from this site, I looked to see if I had befriended them and I haven't, and although I just delete them now without even reading them, I want to know how to stop them being sent to me period, but I have no idea how to do it, do you know by any chance? I'm relatively new to Facebook, and sometimes wish I hadn't bothered with it, strangely enough, the guy who set the "support group" up, asked me if I was on Twitter, maybe that's their next target?! They are going on to upset people on there!
I just want to thank everyone, it's great to know that I am still a decent human being, and not some low life which is how they all made me feel, thanks guys, and don't go on there if you haven't already, it's horrible, and there is something so creepy and sinister about it all, if you don't agree with them, oh dear, you are in for trouble!!

Lotsalove

Lainey
XXXX

 

[Meetz1064]

Elaine, do

you mean the emails from Facebook??

 

[Elaine H]

Yes, it's some two bit "support group" who call themselves Epilepsy Fighters(Speak your mind) I've literally just had a Facebook message from someone who supported me on the site saying that the nastiness about me has just started up again, so it just shows you the mentality of the people on there. I actually unfriended them earlier on, (even though I never actually friended them!!!) There are a couple of right bitches on there who have slagged me off for everything, and although I told them to poke their comments where the sun doesn't shine, and I wouldn't be back, they are apparently still calling me names, how childish can you get huh? I can't believe that the site is called "speak your mind" and we are all adults with epilepsy, pathetic!! Well, let them get on with it, I have other worries in my life at the moment.

There was another one called United Kingdom Against Epilepsy or something similar, and they aren't even in my friends list, so God only knows who they are, I haven't been bothered by them for a while now, so hopefully they got the message, I wouldn't mind if I'd been abusive or out of order with these people but I wasn't!!

Maybe someone brave would like to go in and have a look, I'd love to know what you think?

Lotsalove

Lainey
XXXX

 

[Meetz1064]

OK, Elaine.

In the top right corner of the FB page is an Account thing. Click it. Go to Privacy Settings. There are options for letting people access your information. Choose the one to customize, and do so appropriately. Save it, then down at the bottom, in the middle you'll see something about Editing Blocked Users/Lists, etc. Click on it. Plug in information as requested.

That's really all it takes.

Hope it helps. I did it the other day to someone......so if I can do it, so can you!!! LOL.

 

[CrunchyFrog]

Facebook these days is not properly moderated, there are lots of great groups but, there are also a lot of hate groups and groups pretending to be something they're not. I think a lot of people on Facebook join groups just to have a laugh at other peoples expense. It's better to be part of a smaller forum like CWE because, it's a lot easier to police. I've noticed that the mods here are quick to get rid of the pests (Like the people posting photosensitive material to try and trigger seizures) and don't tolerate abuse.
It's a shame you had that experience. Some people just have nothing better to do with their time than to create drama and cause arguments. All you can do is walk away knowing that your better than that.

 

[Elaine H]

Many Thanks Jake!!

Hi Jake

Thanks for that mate! I've just sat and plonked about with Facebook and it's made me realise just how much information they can get from us, if we don't realise when we join as I didn't, it was just that I heard all these people going on about it and thought I should have a look, so one day I sat there and messed about and set up an account on FB and Twitter, I must say that FB has been great for catching up with old friends, but that's bout all, I think I've set it so that only friends can access me details, I can now see how it works, these weirdo "help groups" come along see the word epilepsy in my profile and send out (without my invite) all these messages, it started off ok, but believe me it got really really nasty, and I was not in the right state of mind to be dealing with it having recently split with a long term partner and life is crappy enough at the moment without them adding to it!!
Anyway, thanks again for your help Jake, and I hope you're enjoying your time on CWE, are you fairly new to the site? I've been a member since early 2008 I think, but not popped in for a while, it is a brilliant site, and I hope you make as many friends as I have on here.

Cheers

Lainey
XX

 

[Meetz1064]

Sorry to

hear about the split with (Mark?) your partner, Elaine. Things WILL get better, you MUST keep a positive attitude about it.

I've split on a permanent basis with my husband of 25 years now. The divorce was final in March, but in my case, I was happy to end the relationship. I don't think you were, and for that I'm sorry. Don't feel sorry for me, be happy, and look at this as a new adventure. I am.

I've found someone new to love, and that's all I'm sayin' on the matter. But I'm happy, and you can be too. Just keep a positive outlook.

FB on the other hand, can be a blessing, or a hindrance. It just depends--and sometimes it's really a PITA. Now that you've changed your settings, things should improve dramatically. Good luck with it. You should be fine now.

 

[Elaine H]

Hi There
Thanks for writing to me, glad you are all happy now and settled in your new life, but I just can't see a way out of the mess I'm in! I wouldn't have Mark back if he was the last man on the planet, not after this, I never thought he'd hurt me, and boy this hurts, not because of the split, but because, I am alone in this house, I don't know anyone round here, no neighbours, no friends, no job, no money, no family, and of course I can't jump in the car and go and see the people I do know, they all have lives of their own now though, and are all settled down. My Dad is hundreds of miles away, my brother doesn't give a damn about me, and the one aunt who cares is also down on the south coast. I just don't know where to start, and I am absolutely terrified about where my life is going next!! I don't like change full stop, but my entire life is about to change beyond recognition, and I have never felt so lost and lonely before in my life.
I feel like a real burden on the friends that I've seen in the last few days, neither of whom live nearby, but made a special trip to come and cheer me up, it's like oh no, not Elaine again, will she ever sort her life out, that's how I feel anyway, ..., I really mean that, pathetic I know, but I don't really serve a purpose on this earth, and I don't know how much longer I can stay in this house alone, every day and every night for nearly three years is just about enough!!! Thanks for caring enough to write to me.

lol
Lainey
XXXX

 

[Nakamova]

Hi Lainey, I'm so sorry you are having to deal with all this. Remember, your friends and family care a ton about you, even if they are far away. And you aren't a burden on the friends who made a special trip to come cheer you up -- they came because they wanted to help, and because your happiness and well-being are important to them. I'm sure they understand that this is an especially rough patch for you, and it's definitely okay for you to call them and lean on them to help get through it. And I bet you would do the same for them in a heartbeat. Can you look into moving to a smaller place, perhaps even one with a roommate or more folks around? Are their resources to help you re-settle, and provide counseling? Don't be shy about asking for help.

I send you huge hugs, and sincere wishes that you can turn things around.

 

[Meetz1064]

Awwwww, Elaine.

I agree with Nak. There HAS to be resources around you that can help. We have different things here, like Social Security, some places have agencies that cater to specific age groups, and the like. Have you checked to see if any of those things exist in your area?

I'm sure that there is transit of some sort, isn't there, to help you get around? Free bus passes or something like that? That would be something to check into as well.

You know, we are all here for you, and sending you tons of positive thoughts and prayers. And if any of us can think of any bright ideas that might help you, we'll be sure to let you know.

And remember--YOU ARE THE BEST. So hold your head high, and keep marching on. You'll be fine--and Nak was right. Get rid of the house--and the old memories that go along with it. Find something fresh and new.

(((((((((((((HUGS)))))))))))

Meetz