Sunday, December 4, 2011

Online Support Forums: Do They Help or Hinder?

Online support forums such as message boards and Facebook groups are created to provide a community for people who are all seeking support for a problem they all share.

This seems like a safe, warm situation, right?

It ought to be, but as I've noticed over the years, these forums tend to promote ignorance and irrationality, mostly based on faulty logic:

Some members make a ridiculous connection like:

"Who else hates the smell of Chanel Number 5?" "OMG I do too! It must be the X condition."

So these members feed off each other and medicalize the condition by attributing everything, even natural biological processes, to it. This is not supportive and it also distracts from the real purpose of the forum: to provide emotional support and information about assistive devices and social programs and medical professionals who specialize in the condition, etc.

Many members will ask the others for medical advice: "I have X symptom. Is this serious?" Some members remind this poster that the members are not medical experts and advise seeing a professional. But some do give advice, despite having no expertise. Some do give expertise, claiming to be a nurse or whatever. They very well could be nurses, but you should never take someone's word for that over the internet. And anyway, a medical professional can't do much without a detailed medical history, an examination and tests. And some give advice without claiming to be a professional, but do claim some sort of expertise as a patient with experience.

These faulty connections wouldn't bother me so much if the moderators of these forums spoke up against these posts and deleted them. Medical forum MedHelp is a bad offender for this. But the moderators of forums I've visited usually don't. I guess maybe they feel their forum's disclaimer "Not for medical advice. See your doctor." absolves them of responsibility. The worst danger comes when the moderators are just ignorant as the other members and think that this nonsense is actually helpful.

There are also moderators who allow some people to inundate the forum and post totally irrelevant things because these moderators claim that most anything is relevant and supportive.

It's a real shame for people like me who could use REAL support. What I do have in common with these forum members I refer to is that none of us seem to be getting the help we need from our doctors to live fully and actively or information on what to expect in the future or be concerned about, despite our efforts.

4 comments :

  1. I know what you mean, Ashley. I've seen people medicalize the weirdest things (like the little jerk your body gives before you fall asleep). It makes me smack my forehead. I try to limit my advice to "You should see a doctor about that." or something in that vein.

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  2. Yes, it IS weird, Yvette. I think a lot of it is due to our culture. There's so much fear mongering going on in the media, from drug companies, etc.

    Now why can't there be more sensible forum members like you?

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  3. I agree wholeheartedly with you. It drives me batty on some of the forums and now I only really access 2 and ignore the rest. Even with these I sometimes want to scream and shake certain members who comment with absolute crap advice with no scientific backing.

    I think part of the problem is the rise in the idea that all doctors don't care and/or are idiots (not that I haven't met a few of those). I think as a society we also have come to believe we should never be ill and there should always be a solution. We've forgotten that little things like colds and flus and the like are normal parts of life,not pleasant, but also not needing a pill to fix. The reality is there are some things that really are a sniffle, things that are difficult to treat and some things that can't be treated. Maybe it's a cultural thing, but I find it strange reading FB and forum posts where people tend to essentially live at the ER for things that over here you just accept as part of life and your particular condition, and wait for an emergency to go. It feeds into the medicalisation of society and general dissatisfaction with treatment, which is then reinforced with follow up comments.

    I do find it alarming when other patients start recommending medications and doses with little to no knowledge of the person in question's complete medical state or no background in medicine or science. And don't get me started on the "I sneezed when I sniffed pepper, it must be due to (insert condition)". So many groups start with good intentions but so many go awry. Okay this may be a bit of a bug bear of mine. Sorry for the rant :)

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  4. Rusty - I'm so sorry I forgot to reply to your thoughtful, detailed reply!

    I think you've hit the nail: I think a lot of people feel that symptoms of any kind are unacceptable or indicative of a serious problem, when that often just isn't the case. Symptoms are just part of having a body and you can feel terrible and be totally normal, medically. Advice-seeking behaviours on these forums about true suffering (not colds and other benign, normal things that make you feel terrible) seem to arise from doctors who just don't care to help, write suffering off as normal or don't believe patients who come to them with real issues. It happens too much.

    The irony is that the medical community is in many cases what has spurred the medicalization: the medicalization of childbirth, menstruation, normal behaviour, etc.

    Don't be sorry for your "rant." It was great! And this is definitely a rant worthy topic because what we've discussed deflects attention from the real work that really helps people. And the widespread ignorance is concerning...

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