Wednesday, September 09, 2015

It Could Be Worse

In online forums, parents of children diagnosed with Type 1 Diabetes sometimes bristle at comments they've received to the effect of "It could be worse.  He/she could have (fill in the blank - usually with the word cancer)".  Most parents of children with diabetes intellectually agree with that statement.  In fact, if you read more in those online forums, you will come across posts from parents that write about encountering someone with a difficult diagnosis and that it gave them pause. But with raw emotions and grief at diagnosis, many rant at being told, "It could be worse".

Why that reaction?  It's the truth.  It could always be worse.  There are children with multiple diseases.  My sister, for example, is a specialist pediatric nurse for children with cystic fibrosis. Some of those children have multiple diseases, including Type 1 Diabetes. Additionally, their life expectancy is much shortened.  But, and here's the crux of it:  Just because another person has greater pain or a worse condition does not make the pain in front of you mean less or that you can't give support.

But, we, as a culture, don't practice enough learning the right things to say or how to listen. Most people faced with a chronic disease just wants someone to acknowledge the pain and difficulty. That's all. They don't want to hear about your great aunt that lost both her legs (to Type 2 which is a different disease altogether), about your cousin's friend's boyfriend that died from Type 1, about your pet that has it. They want you to hear them, see them. Understand. 

A common thread is, "You won't understand life with T1D is until you live it". I recently spent a week with that sister and she said she didn't know what I have to do, how hard it is until she saw it. She lived with it. And do you know? That made me feel so validated that she gets it. Nothing cheers a person up more than, "it could be worse!" Gee, thanks, what's next as if this isn't enough? I so appreciate your reminder because I couldn't have thought of that myself. 

If I could take away T1D from our lives, I would. I would, in fact, accept it as my own disease and spare my son. Since that isn't possible, I do have to look for any silver linings. It is making us better people. I probably have been guilty of saying the wrong things at times and not listening enough. If you experienced this, I apologize - and am doing better at that, I think. 

Who the bleep decided we would no longer double space after a period when typing? Do you know how difficult it is to break that habit? Two spaces messes up the formatting on Blogger.

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