Help out a student!

Hello all,

I'm a student from Ithaca, NY, and I'm writing a piece for class, advocating for online support groups. I was wondering if any of you have words to share about your experience in an online community. I'm open to all feedback.

Thank you!
Jamie

My e-mail address is barrette416@yahoo.com

Edited November 26, 2009 at 7:57 pm

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7 replies. Join the discussion

Hi Jamie,

This particular WomenHeart community offers the most diverse topics that women challenged with all sorts of heart disease and damage issued freely discuss. Heart damage can be such a gargantuan, multi-headed hydra collection of debilitating symptoms that it literally takes years to grasp what is wrong and where to start first with the research. Because there are so many bright, educated women here, this list has offered the invaluable advantage of a really steep learning curve.....and so much helpful information from real women that is genuine....and so many coping suggestions, practical ways to manage life with permanent heart damage that doctors just don't have the time to explain. Currently, remains the only site where one can post an urgent request for help and receive almost instant replies from women committed to help one another.

I easily give this WH site a 10 on a 1-10 ease of use, credible (friendly) discussions that have helped put many confused women on the right track to advocate for more aggresssive medical care for themselves.

Good luck with your writing.

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I agree with Martzi about this site. There are other well-informed posts to other sites out there. I learned alot about fibromyalgia in 2001 before I was diagnosed and some of those people on a fibro site helped me through some long painful nights. There are also other heart sites that helped me back in 2001 when I first had a heart attack and thought I could never eat anything but lettuce again. The thought of my eating real food again made me sick.

I vote for help sites 100%. Chat boards in general, like at Yahoo, not so much. Some people get weird and downright nasty when they can hide behind a screen. I've been threatened more than once since I began online in 1998. I also made some really good friends who I've gotten together with offline. So, you take the good with the bad, keep what you like and toss the rest. It's all good.

Good luck on your paper.

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Jamie, an online chat group can be some folks link to another human being. By finding the "right" group you can share, learn & bond and develop friendships. What's nice about this is that you control the amount of intimacy.

Another key is in learning what information is of importance to you and then researching it on your own to be sure that you are being given correct data. Those that use an online chat group in place of one on one medical attention are foolish. This is not intended as a substitute for any medical care. Nor is my case like that of another persons case but there may be similarities that can invoke food for thought.

Good Luck on that paper, let us know how it goes..

Blessings & good vibes.. Denise

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There are online support groups - and then there are online support groups. It's impossible to broadly describe them as 'good' or 'bad'.

This particular WomenHeart group (and other Inspire groups) are especially useful because this site is MODERATED by site administrators, meaning members can report abusive or inappropriate posts. This largely prevents the content from deteriorating into the 'chat board' mentality that, as Asurvivor says, can be downright scary. There are some seriously angry people out there just looking for a place to rant and a fight to pick.

For example, I recently posted a comment on another online support group site on the subject of clinical depression, and my response provoked not one but SIX lengthy hysterical rants in one day from a man who believes that all psychiatrists are evil and must be eradicated from the planet. And every day he continues to post yet another rant, 'louder' and longer than the day before. Needless to say, no one else is posting on that topic as long as this nutcase is continuing his virtual shrieking. Not helpful... This person would be quietly removed from an Inspire site.

Most comments on online support groups, while they may be moderated like the Inspire site, are still not vetted before posting. What you type is instantly up on the screen the minute you hit the "post" button, with no editing. This can be both positive and negative, opening the door to pseudo-scientific quackery, amateur diagnostics, and non-medical advice that may or may not actually be dangerous.

On the flip side, the level of supportive and caring comments can be remarkable, with a generally high degree of acceptance for no matter what comments are posted, when members are just having a very bad day, and also almost-instantaneous quick response to almost any question posted.


http://www.myheartsisters.org

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I never run into someone like me in my daily life - a woman in her 40s who had a heart attack. Even last night I had a doctor tell me how unusual I am for having a heart attack at this age with no risk factors/family history. People look at me like a freak when they learn about it, so I'm careful who I tell about the real me.

But here in the WomenHeart group, I find dozens of women like me. They understand the challenges I've been through and the ones that are still ahead of me. It is hugely helpful to be understood, to hear "I've been there, you will get through it".

I've been in a support group for another topic, one that lasted 9 weeks. That group was very helpful but the support network does not go much beyond the boundary of the group - a very small sample. This group has hundreds of women with experiences that can help me. I'll have it available to me for as long as I choose to participate.

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Jamie, I've been around support groups (and their non-health variations) - as a provider/ convenor - for many years. What has been said here gives you truly heartfelt and truly "real world" guidance for attempting to define what makes a support group valuable to its participants.

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Thank you, all! I just have a small favor to ask. Would you mind giving me your e-mail addresses? (You could just e-mail me at the address above.) We do peer reviews in class, and my partner will need to do some basic fact-checking. Essentially, you say, "No, Jamie's not lying. I wrote this statement/discussed this topic on the WomenHeart website." And that's that. You can remain anonymous. The class respects support groups and what they stand for. Also, (and maybe this is asking too much) but if you'd be willing to give me a real name or maybe just an occupation, that would be wonderful. But no pressure!!! You've already done so much. =) Last but not least, if you're okay with the idea of sharing your e-mail address, would one of you be willing to answer a handful of questions via e-mail?

Thanks again!!

Jamie

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