12 Jul 11:55
Friends & family
I just found out that this forum is open. Anyone can read and see. Flaym even uses our questions as a quote on Twitter.
It felt save outhere. Now I doubt, I know they only want to help out other P-sufferers.
How do you feel about this?
Please don't include specific medical product brand names or external links.
12 Jul 11:57
This makes a difference to me. I don't want to leave but I will be more guarded and generic in what I say.
12 Jul 12:07
True James. Me too. This is why we are here, to feel safe and the sense of belonging but like you said, be more guarded and generic in what we say.
Million, there are millions of us out there who might not know about Flaym and I'm sure that Flaym is discreet in publishing certain information. - What quotes are you talking about?
12 Jul 12:15
It does make a difference, I am not hiding or a shamed about all this, but I do share private things.
Michelle: they put our questions (like my question here) on twitter. You can click it and then you see the whole forum, you can read everyting and see pictures etc.
12 Jul 12:55
Million, you feel like they are invading your privacy what you have on Flaym? or now you thought you had on Flaym?. This is a forum where we can talk about our worries, insecurities etc, but also a place where we feel we might be able to help someone else and gain some advice as well. Right? You are sensitive to what outsiders 'might' see on your profile as you feel it is confidential and only between us Flaymers? I went onto twitter and yes I saw the questions etc, but I look at it in the way of, we are all here to encourage each other as well as outsiders. We invite them to join and see that we do not only talk about P for hours on hand but about life experiences and what we have lost or gain. We must not find fault with the 'wrong' but applaud the right. You might not know this but someone out there whom has read one of your posts are happy and positive again as you have given them the best advice. By nitpicking and projecting our own insecurities and irritation onto others, we fail to see what the other person is doing right and to be quite honest with you, I do not see a problem with Twitter. You, as a P sufferer whom has gone through so much, have to realize that you are an inspiration to other's. You are excellent in telling people positive things about themselves! You are positive and strong and it will be a pity if you can't share that with others. There might be outsiders on twitter whom doesn't have the guts to spill the beans on Flaym but as long as they know we are here, they have a place to turn to should things become difficult. Million, I do understand how you feel, but remember, no one knows who you are. We keep it honest, and we keep it real on Flaym. xx
12 Jul 13:57
I know that what you place on internet is not private. I know they are trying to help other people. And I know they never said it could not be seen by other people then flaym-members. As I say I am not a shamed of my self or what I tell about myself.
It felt comfortable and save.
Now it felt like being out of my comfort zone.
I like to share with other members and also like to hear their stories.
When I got trusted with this Flaym-app I let go my “holding back”.
Knowing that the whole world can be watching makes me more reserved and carefull.
12 Jul 14:21
I understand how you feel, Millionways, and I suspect many others will feel at least a little betrayed and disappointed by your news. I know I do, even though the world's news events (think Eric Snowden) should have helped us all to see that NOTHING on the Internet can ever be deemed as being truly and forever private. In light of your feelings, I'm glad that we don't see your real name and photo displayed, and in some ways, I wish mine were not, as I, too, am a private person. I knew that I would be "discoverable" here but decided that the greater good could allow for more personal transparency. I suppose the best lesson we can all learn from what you have written is that, while it is a beautiful thing to support each other, we may want to avoid sharing anything we would be ashamed for others to know. That said, there is no shame in having this horrible disease, and there is nothing anyone here did to deserve it. Also, it's doubtful that anyone who doesn't have psoriasis - or isn't trying to support someone who has it - will show up here to peruse our posts. Most people are just too involved in their own issues to be very much interested in ours. So, as disappointed as I am to find that Flaym is using personal quotes from its pages on Twitter, (and I hope it will reconsider this decision), I am nevertheless glad that the forum exists, because everyone who has psoriasis needs a forum for sharing with and being supported by others. On the other hand, unless and until Flaym makes this a closed group, (something I wish it would do), I will simply make sure that I keep my private information private. Blessings and hugs, Millionways! 🦋
12 Jul 14:31
Well said Ava. Thank you ❤️
12 Jul 16:59
I didn’t mean to scare people away. But I was raising awareness. Saying everything in public is not handy sometimes for several reasons, like profession, kids, family or to private or deep feelings.
13 Jul 06:26
I think most people understand, Millionways, but as they've found such community and support in this place, they're generally comfortable with and willing to accept the potential lack of privacy. As we remain, we may feel more comfortable with it as well. In the meantime, as you can see, I've changed my photo to an avatar, strange, perhaps, but a device that may allow me to share more freely on topics I might otherwise avoid. Whatever the case, I think you'll find this group to be highly accepting of other's feelings and opinions - including yours! And you're still anonymous, so relax and know that, to whatever extent you can join in, you are truly welcome!
13 Jul 06:40
Ava, you always have the right words.
To me its hard to explain my feelings in another language then my own.
I know I am anonymous, because I didnt add a picture or use my own name.
I joined up myself and dont blame Flaym for anything.
I still am thankfull that I found this app and joined it. So many understanding and support!
10 Aug 12:29
Well there goes my job,haha,better pull my picture down to.I thought it was a members only site and not quotes plastered on Twitter,thanks a million million ways for alerting us to this information.
10 Aug 12:58
Psst also quote/pictures)/our feelings posted on Facebook too,argh not to worry.
10 Aug 13:09
You don't think my avatar is a picture of me? Yes my name is James and I live in Scotland but no more identifying info. Scotland has a lot of James', I'm not too worried.
10 Aug 13:14
Sue is a common name too,aww we come from all over the world not much chance of work looking at this site,might delete anyway and reincarnate ,that should delete all my posts?
10 Aug 13:20
I don't know is the simple answer.
10 Aug 13:30
Haha,doesnt matter ,just a quick change of name just to be safe,not that there's anything to worry about.
10 Aug 13:39
Yes, it's easy to change your name.
10 Aug 13:49
Haha@conan the librarian.
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