Saturday, September 12, 2015

I just gotta say it...

There are many groups on social media for innumerable medical ailments and afflictions. I admit -- I'm a member of some of them. Each group touts the members availability to offer "support" and advice to people with similar conditions. Sometimes these groups can be very good. They offer immediate feedback or relieve anxiety about concerns.

But lately, I've noticed an abundance of misinformation being shared. Things like whose doctor said what and whose did not, and you should do this or not do that. People come to the groups seeking advice for things they should be asking their doctor, and I can only assume that many of them are following the advice of people they don't know and who don't know them. It seems everyone has an opinion, and apparently, doctors' advice varies widely with every individual case.

It's a regular National Enquirer.

You'd think I'd know better, but I continue to visit these groups and read the posts and comments. And then I find I'm sitting on my hands resisting the urge to counter the foolish advice that is given by well-intentioned, but misinformed or ignorant members. It's hard. Some people take a little bit of information, combine it with their personal experience, and add a whole lot of stuff from God knows where. They get people upset and worried over half-truths. I've even seen comments advising people to go against their doctors' advice. Some people think that adding the catch phrase, "my doctor told me" somehow legitimizes their advice. I've read things I'd consider not just foolish, but dangerous, as well. I wonder how many people have been injured or worsened by heeding advice to "do this" instead of what their doctor said.

At times, I've questioned my medical team about some of the things I've read. It's usually met with a polite smile and information that corrects or refutes the misinformation, and then they tell me to stay away from "those" sites.

We are not doctors.

We don't know the individual medical histories of the people who are posting. Nor do we have years of medical school education or medical practice to support our beliefs on a medical topic. People have a tendency to grandiose the details of their conditions, as well. They weave tall tales of long-suffering. It seems like everyone is trying to "one-up" everyone else, and those "pearls of wisdom" that are shared were earned through personal suffering.

Sometimes, I just can't stand it, and I have to post a comment that reminds people not to seek or give medical advice on the social forum, but to contact their doctor or other members of their medical team.

It's usually met with disdain. People don't like to be called out.

Here is the truth: Having a cochlear implant or sudden sensorineural hearing loss or any other condition does not qualify me or anyone else to give medical advice to another person any more than having had surgery qualifies us to perform surgery.

We should be more cautious about what we post and things we advise. And we should listen to our doctors over social media.

Now there's some advice I will heed.

1 comment:

  1. I agree with your sentiments. One of the reasons I am not as active in most of the groups that I am a member in is because it seems that people have forgotten the golden rule: We are not professional or medically qualified folks! We are the individuals who have gone through the process but are well aware that everyone's cases will be treated differently based upon their own medical history, in which neither of us or those online knows about.

    I will say this, it's always good to ask questions about what you read online to your doctors because at least the doctors are not only being made aware of what kind of misinformation is going on - it will also give them the opportunity to reassure their clients.

    Great post!