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3 thoughts on “Fears of Social Media: a Pre-Halloween Boogie Man Post

  • October 19, 2011 at 8:31 am

    I have found that online support groups have been so very helpful to me. I haven’t been able to find local support groups, and probably wouldn’t be able to get to them on a regular basis anyway. After my diagnosis, and during my first big flare and set of infections that kept me at home for a week, the online support group was vital in helping me keep my sanity, since my rheumatologist wasn’t all that great at giving me pointers on how to deal with the day to day aspects of the disease. I think that’s also when I located RA Warrior, and started really understanding the disease.

    I would have to say though, use caution. It is the internet, and whatever you post is always out there. Also, people are not always who they say they are. I’ve seen people join the online support group and pose as someone with RA (why on earth would they pick such a disease?), for a variety of reasons: to do academic research, to tout a miracle cure . . . who knows why people would want to take advantage or hurt others. I would say just be mindful of what you say, don’t disclose information if you feel it is too personal or if you need to maintain anonymity, and if its sounds too good to be true, well, it probably is.

  • October 19, 2011 at 1:09 pm

    I never did understand why others thought it ws alright to tell another what should or shouldn’t go on an individuals blog. Or worse yet, tell you how you should or should not complain about a disease. Go figure? Did they ever stop to think it might help to vent the feeling, get on with your day & enjoy it? I say ‘screw em’ post what you feel, defend what you must and drive the rest to the dump.

    Good post.

  • October 20, 2011 at 8:30 am

    It does not make me feel any better to divulge my pain to anyone. Not everyone gets pleasure from sympathy. There is also the risk that if you do not agree you risk being accused of not having RA.

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