A short time ago I was involved in a disagreement between two parties on Facebook (FB). I did not get caught unawares in this disagreement, but rather inserted myself into it, in defense of one party, against the other. Here's the situation: A friend of mine, a mother of two children, had recently found out that one of her children has Celiac Disease, lactose intolerance and a few other food allergies. She has been feeling a little bit overwhelmed by this (which is natural and completely expected) and has been asking her FB friends and for advice and support. In this particular instance, her child had accidentally ingested some lactose and was dealing with the unpleasant consequences. She was seeking advice from her friends, many of who were living with lactose intolerance and/or Celiac Disease, on how to help alleviate her son's symptoms. She got a plethora of advices, mostly on how to help with the stomach upset...everything from mint and ginger to Benadryl and activated charcoal. Then, after a time, another friend jumped in and chastised her for seeking medical advice on FB.
This is where I chose to insert myself into the discussion, no holds barred, in full support of my friend. And that is what prompted all the thinking that has fed this post.
When I was diagnosed with Celiac Disease just over 6 years ago, my doctor didn't have a whole lot to tell me, other than to not eat gluten. I found out how to cook without gluten, how to deal with "mistakes", where gluten likes to hide, and a myriad of other things from a support group, located in a town an hour way. Since I couldn't drive yet, I only visited the support group once, but it would have been immensely helpful in those first few months to be able to visit it more.
When my parents found out that their children (at that time there were two of us) had food allergies, doctors were less than helpful in giving them advice on how to deal with them. One doctor even told them that I couldn't live on wind and water, so just to let me eat whatever I wanted. This by the way, was horrible advice, and had it been followed, I probably wouldn't be here to write this today.
In days and years gone by, support groups, whether formal or informal, have been the the "go-to's" when trying to deal with changes in life. It is, I think, an instinctive behavior. When faced with a change, with something new or unfamiliar, we seek out others who have gone before us, others who know the path. Before embarking on a wilderness adventure we want to talk to someone who has been there before, someone who knows the terrain - the dangers and joys of that location. Before going on vacation, you talk to friends who have vacationed in your chosen location before you - seeking out the best restaurants and which sections of town you are best to avoid. When a mother is expecting her first baby, she talks to her mother and her other friends who are already mothers - finding out what to expect, what worked for them and what didn't work them. Same with potty training, separation anxiety, making pickles, beginning to drive, shopping for a car, making a quilt....we seek out others who have gone before us and ask their advice.
In days and years gone by, our support groups were very physical things, our neighbors down the street, the people we sat with at church, our families. Today, with the Internet and the use of social networking sites, such as Facebook, our support groups have changed slightly. Now, if I have a question about a new food, or how to deal with a reaction or need a new recipe, I have the experience of over 12,000 people to draw from. That's a crazy huge support group.
Now, as much good as there is in these support groups, there is also, I think, some danger in these crazy huge support groups. They are great for support, but I think if one is not careful, they can be dangerous. Support groups are not for diagnosing things. That is the job of your doctor. Support groups are not for treating life-threatening situations while they are happening. That is the job of the emergency room. Support groups don't always have good, correct, or complete answers. That's the job of G-d.
Support groups do not replace your doctor, but when used with a good dose of common sense, they can be very useful. They can help us learn to manage conditions. They can help us generate questions to ask our doctors. They can help us determine, in some cases, if we need to seek further medical attention.
I am in support of online support groups, when used with common sense. I enjoy giving advice out of my lived experiences and asking for advice from others who have gone before. The Internet, especially social networking sites, like Facebook, have erased borders and time zones, for better and for worse.
Are online support groups replacing something in our society? I think so. Everything new replaces something old. I think we just need to be careful what they are replacing and to ask ourselves if we really want replace that.
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