Tuesday, January 6, 2009

On Being Misunderstood

Something occurred recently that left me a little shocked, a tad hurt and moderately frustrated and I feel the need to talk about it.

You know how the general public doesn't really know about type 1 diabetes? I mean, they think they know but they don't really know. It's not news to those of us who live with it on a daily, around the clock basis. We've all witnessed the ignorance. Ridiculous comments about what a diabetic can and can't eat, preconceived notions about the health of diabetics and the challenges they face, not to mention the blatant judgements as to why our children became diabetic, usually placing the blame squarely on the parents. One of my favourites was when a friend of mine stated shortly after my two year old was diagnosed that diabetics struggle with their weight and so my daughter would have to be careful about what she ate. HUH?! I didn't really know how to respond to that one. So I just calmly informed her that type 1 diabetics don't struggle with their weight anymore than anyone else... then I did some deep breathing and found my happy place.

To get to my point, I expect that most people who don't have any first hand experience with type 1 diabetes will have those kinds of misconceptions and even though I'm still annoyed, if not offended by some of them, I accept that there is a great lack of information and an abundance of misinformation out there with regards to this disease. BUT... I was surprised to discover during a recent telephone conversation with someone very close to me that this ignorance isn't just exclusive to those outside the family realm of type 1 diabetes.

An over-simplified solution to a hypothetical scenario involving my husband and I being away from our type 1 diabetic, pump wearing toddler overnight made me realize this person didn't get it. I mistakenly thought, or perhaps wrongly assumed that this person grasped the complexities of this disease and it's implications on our daily, if not, hourly lives. Now, to be fair, this person doesn't have any first hand experience with type 1 diabetes. This person hasn't even seen my daughter since her diagnosis and has only spoken to me on the phone a handful of times where the topic of conversation has been about my daughter's diagnosis. Nevertheless, the obvious lack of understanding made my heart sink. I suddenly felt quite lonely. Someone close to me who I thought really understood, didn't.

I should also mention that this person is a wonderful, caring person. I love this person immensly. I want to make it clear that this is not to injure or attack this person. This blog serves one main purpose; to help me deal with my daughter's diagnosis and all the ramifications it has on my life/our lives. I am merely venting and looking for understanding from those people in the world who do understand because they have been dealt a similar hand. That is the best way I know how to cope. Because, as parents of children with type 1 diabetes know, the only way to get through it and cope with the heartache is to reach out for understanding and support.

I have found a great deal of comfort and support from perfect strangers who also live with type 1 diabetes. It almost defies logic that someone as close to me as this person is would not be able to offer as much acumen. And in spite of the fact that this person's lack of appreciation for our situation is understandable, it still left me feeling... well... misunderstood.


Angie said...

I completely understand. Others, even the most loving and caring people, don't really get it. Hang in there and know we are all there for each other. (What did type 1 parents do before blogs?)

I also get a lot of the diabetes/weight misconceptions. What kills me is people asking, "Was Sain a fat baby?" I alternate between being angry and amused (she was the only 2 year old I knew who "played pilates" and had a washboard stomach!)

PancreasMom said...

We are all here for eachother, and I too agree and understand that even those we love the most, without the 'hourly' or even 'daily' attention to the diabetics in our/thier lives cannot understand, or even realize how they could and would attempt to cope, or sometimes not even understand the concept of having to cope! We continue to love those, and we hope, that one day (soon) not through thier own personal experience, but personal growth and courage that they can reach out and understand, and be able to intelligently deal with, and become educated on the truths, and realities of living with diabetes, and those around them.

I can tell the difference between a rant and a release.. and I understand your release, and not only does it help you* (*hopefully) but it helps me, and I am sure, other parents of diabetics understand that regardless of 'the others'; there are those who understand, and support eachother, without the immediate bond or connection personally... so thank goodness for cyber connections :)