Tuesday, February 2, 2010

The Sadly Misinformed and The Dangerously Uneducated

I get somewhat annoyed with the ignorance that is everywhere with regards to type 1 diabetes. If you are reading this because you or someone near and dear to you has type 1 diabetes then you know what I’m talking about.

I’ve been relatively lucky so far; since my daughter’s diagnosis nearly two years ago I've only had a handful of uneducated people reveal their ignorance to me with ridiculous statements that they attempt to pass off as firsthand knowledge because an elderly relative of theirs has (or had) diabetes. Let’s face it; chances are their experience is with type 2 diabetes. But they claim to know “all about diabetes” because of this feeble link they have to a disease that is vastly different from type 1 diabetes. If they really do know so much about the disease my daughter has and will have for the rest of her life, barring a cure, why on earth do they say such oblivious remarks as, “So is your little girl diet-controlled?” And why, when I answer their questions about how often I check Jenna’s blood sugar with “...usually six to ten times a day,” does their jaw drop to the floor?

So I guess I could cut these people a little slack. Obviously there is a huge information vacuum out there with regards to type 1 diabetes. It truly is a disease that you can’t possibly know everything about unless you have had some extensive firsthand experience with it. So what this really says is that we have a lot of work to do educating the public. But that excuse doesn’t hold water when it comes to medical professionals.

A pediatrician once doubted that a quarter unit of insulin would have any real effect on my then two year old daughter’s blood sugar. This doc actually scoffed when she looked at my dosing record! I believe her statement went something like this: Do you really think a quarter of a unit does anything? Hind sight has me wondering why I didn't counter her query with: Do you really think they would have bothered manufacturing insulin pumps touting the ability to deliver a basal rate as low as 0.025 units per hour if it were that insignificant?

A GP once told me with obnoxiously arrogant certainty that illness has no effect on my daughter’s blood sugar. I was in such disbelief that I wasn’t sure I heard him correctly. How can people trained in the medical arts be so misinformed? How is that possible? Am I alone in feeling somewhat unnerved by this?

This is unacceptable. I think we all have an obligation to our loved ones with type 1 diabetes to spread some much, much needed knowledge. Evidently, we have our work cut out for us!

3 comments:

Steven and Felicia said...

To an extent, I understand your frustration. I work in fundraising for a pediatric healthcare system in Georgia and have recently partnered with a physician who is wanting to develop a center for research for Type 1 Diabetes. His goal is to help develop current treatment regiments that will better the lives of those dealing with this today while also working towards finding a cure for it.

It has been extremely educational for me and I can see where you would have many frustrating moments with the vast majority who have heard of this issue but know very little about it.

I don't know where you are from, but I hope you are around good support networks and great specialist docs who are in your corner.

Take care,
Steven
(steven.wagner@choa.org)

christopher said...

You are absolutely NOT alone!:) I've found recently that sometimes it is just unfortunate that people even open their mouths at times. My answer to all the "diabetes experts" that are dealing with Type 2 diabetes is, "Oh, my daughter has type 1- same name, different disease." Although that's not ENTIRELY true, I feel like there's a significant amount of truth in that statement. I really wish the names were different as well.

Sherry said...

Steven: Yes, thankfully, my daughter does have a fantastic endocrinologist. She is knowledgable, kind and most importantly her ego is in check. She told me during our first meeting that I would quickly become the 'expert' on my daughter's diabetes. I like that she recognizes this unique doctor/patient dynamic that seems exclusive to type 1 diabetes.
Christopher: I couldn't agree more! They really do need to come up with different names.