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Posting about Lyme on Facebook?

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Posted 4/4/2015 1:07 AM (GMT 0)
I'm not sure if I should post about Lyme on Facebook or not.

I know I have alienated some friends by doing so.

On the other hand, (one post in particular, which included a video) was acknowledged by several friends, and even shared. My friend B. commented that this video was "eye-opening."

I know that one or two members of this forum choose not to post about Lyme on their pages.

I also struggle with the issue that perhaps I'm trying to "prove" to people I know that my disease is real, when in actuality, sometimes the harder you try to prove something, the more you end up not being believed.

The other dilemma I have is that a bunch of Lymies, essentially people you've never talked to, will try to "friend" you. Not sure I want THAT many "friends." I know you don't have to friend someone back, but I've heard FB is hard on people who don't get a reciprocal offer.

Then again, I've also met a few nice people from one or two of the FB Lyme groups.

To post or not to post, that is the question . . . . ?

M
Posted 4/4/2015 1:15 AM (GMT 0)
I haven't posted yet, either...almost did a couple of times. I'm kind of a reserved person except to people I know well. I don't want it to look like I'm ramming it down everyone's throats...if that makes any sense.
I think when i get further into healing, and I'm more confident, I will maybe post.

I have people that have requested to be friends (nothing to do with Lyme) and I haven't accepted.
Posted 4/4/2015 3:49 AM (GMT 0)
No I never do. I guess I feel like it would just be venting and I don't really like to use facebook to vent. I really post anything on facebook though. I used to make videos regularly for YouTube of one if my hobbies and I might include something about lyme since it's why I took a break from making videos this year in the description of my next video. I will share that on facebook so that is probably the extent of which I'll mention it on facebook. I don't respond to random friend requests all the time. Don't add anyone you don't want to, it's not your responsibility how they will feel about it.
Posted 4/4/2015 1:43 PM (GMT 0)
Once a year, in May, I post a reminder to everyone to be aware of ticks with a link to the ILADS site. And I'll ask people to sign petitions. I don't like to post about my own health, though; I like to keep my posts up beat and healthy.

When I stopped medications, thinking that I was all well I posted that I had "beaten Lyme". Two weeks later I really regretted that! While I wouldn't really worry about ranting on about Lyme and the ridiculous controversy that surrounds it because so many of my friends have their obsessions -- exercise, religion, gay rights, animal rights, you name it -- I've never wanted to be defined by Lyme etc.

It's bad enough to be at a party and have everybody come up to me to talk about Lyme. Jeez, guys, I came here to have fun! I'm looking forward to the time when I can leave all of this well behind me, so I keep all my notifications to my close family and let the world see me as that crazy gardening goat lady!
Posted 4/4/2015 2:45 PM (GMT 0)
I post when it seems important, or a "fun" way of attracting attention (like the lyme disease challenge - similar to the ALS, if there is a really good one). I keep it to a minimum, but really hope it reaches someone, touches someone's life, reminds them of someone they could tell, etc. If we all reach even just one person, it could save their life...

Like Girlie said though, don't want to ram it down their throats or have them unfriend you, then we can't reach them :)
Posted 4/4/2015 3:24 PM (GMT 0)
I post, but more occasionally: upcoming documentaries, Lyme awareness events, month of May, ...

I don't feel embarrassed about it any longer, especially when I have to read entire books about colds, broken up relationships, daily updates about pregnancies, etc LOL

Oh, I'm one of those who doesn't accept everyone asking to be friends (just a minute, I'll go check): 22 are on the list at the moment, just because I don't want to share everything with everyone.
Posted 4/4/2015 7:44 PM (GMT 0)
You folks are right. On that note, I think I've been posting too much about Lyme, although I don't post about my own health (well, only a little, as in when I thanked friends for helping). I usually post youtube videos and Lyme Advocacy stuff. I think I'm going to tone it down.

I might also unfriend some people (oops)!

M
Posted 4/4/2015 7:56 PM (GMT 0)
Broadcasting your Lyme can backfire.

Not good for current employers or future ones to know this. Its a dog eat dog world out there.

People get fired or not hired every day for illnesses. Law does not matter.

If you were a company owner, would you hire sick people? Reality can be harsh.
Posted 4/4/2015 8:17 PM (GMT 0)
Yikes.

M
Posted 4/4/2015 11:26 PM (GMT 0)
I would say not to post about your lyme journey. Facebook is not like this forum where you can get kind of personal and reveal stuff. I would not do it but that is just my opinion!

And I hope you are feeling alittle better by now!
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