Support groups bring out the best and the worst in people.
For those needing support it can be a lifesaver. It can mean the difference between understanding an issue, venting about a problem, or simply just talking about people’s problems make them feel better. It can mean getting help navigating difficult and complex social issues. It can just be a bit of sunshine on an otherwise terrible day.
For people who are newly diagnosed with a disease, say like celiac, it can be a great source of information that may be unavailable in such an easy forum. It can be place to ask questions and get answers to things someone might be embarrassed to ask about in person. It can mean understanding things like cross-contamination that isn’t in the common vernacular in the non-celiac world. It is great for all of those things and when used properly, it is a great place.
The problem is, many times people are using support groups as echo chambers to enforce their own misinformation. When someone presents them with facts or something alternate to their view or the group’s view, many times they are attacked. I’m not saying everyone is right all the time, but we certainly have to listen. If someone is wrong, they are wrong. That information should be dispelled immediately. Like the sourdough bread conversation that inevitably pops up about every six weeks – no traditional sourdough breads are not safe for those with celiac. A gluten free sourdough bread is. Or my favorite – wheat in Europe is safe for those with celiac. I’d have moved to Europe long ago if that were the case.
If someone says something that seems crazy or smacks of incorrect information, ask them where they got the information. If they can prove it, great. I will always research it and read whatever information they provide. If it is from a questionable site, I will probably disregard the information. But if its’ legit, I will add that to my base of knowledge on celiac.
Or worse, there are the people that have a superiority mentality. They are sicker, worse off, or have less supportive friends than you and want to complain about it. Believe me, we all have bad days. I talk about that on here when it happens to me. But I know that I will always get up, dust myself off, and move along. Some people want to wallow in their misery, okay, I’ve done it too. But I have a tendency to want to give a pep talk in that scenario. Sometimes my “pep talk” doesn’t come across as kindness, but more of a kick in the teeth. Eh, maybe you needed that too. 😉
I don’t put people down, I just offer some aggressive advice on how to make it better. Also, my husband doesn’t like my “pep talks” so I’m trying to make them more peppy and less aggressive.
An example of support that I have a hard time with is where a person has been diagnosed with celiac disease by a blood test alone and their endoscopy was inconclusive. Their doctor wrote in their chart they have celiac disease. Perfect! A year or five down the road, the person has to move and change doctors. They take all of their records and information with them to the new doctor. The new doctor reviews the file and has a tendency to be a little stricter with the diagnosis. They want to revisit this diagnosis with a gluten challenge.
The typical responses to this post are…. “WHAT?!? How dare they question the diagnosis?” or “Change doctors” or “There is no reason to poison yourself just for a diagnosis. You have a diagnosis.” My answer is, what if the original diagnosis was wrong. What if the doctor made a mistake? What if you’ve been eating a gluten free diet all along and you didn’t need to? What if it was something else entirely? Too many questions.
The person that made the post is looking for support in their decision not to trust the new doctor. While that is support, is it good support? These are decisions each of us have to make. I have a tendency to err on the side of the doctors.
As I’ve researched more and more about celiac, I’m starting to think they are right about a few things. I think there is a lot we don’t know but as more and more research comes out, we are learning more and more. We know better what a proper diagnosis looks like, what glutening symptoms look like, what cross contamination looks like, how much gluten we are probably getting on a day to day basis, what some triggers may look like, and on and on. We still don’t know what causes celiac. We don’t know how our inability to truly remove gluten affects us long term. We don’t know what the true rates of refractory celiac are — I think they are higher than reported, but we will see.
Anyway, my point is, support groups should be used with a grain of salt. If you need support, then by all means take advantage of the group and all it has to offer. But don’t assume everything in the group is 100% accurate. That is all!