Wednesday, February 4, 2015

I Was Never Told

I remember when I was first diagnosed with diabetes and trying to come to terms with what it all meant. Trying to figure things out. Trying to sort through the information that I was given by supportive, well-meaning diabetes educators who, more often than not, did not have diabetes themselves.

I learned a bit from the people who were there to teach me. But I learned the most from just living the experience. I learned. I adopted that knowledge into my new reality and then forgot that I didn't always know it.

Like learning what a low feels like.

I was told that low blood sugars feel like this:

I was not told a bunch of other stuff and ended up having to figure it out on my own:
  • I was not told that low blood sugars can happen when you're full from dinner. And you will have to gag down food when you really don't want to. 
  • I was not told that they often happen at the worst time. I was not told that I might have a dramatic low while in the shower and would have to get out with shampoo still in my hair, stumble to the bedroom for juice and then sit on the side of the bath dripping wet for ten minutes before I could stop shaking enough to rinse my hair. I was not told that lows can happen in the middle of presentations at work. While making love. In the middle of eating lunch (I'm already eating for heaven's sake! Piss off!)
  • I was not told that those fast-acting carbs that you need during a low are rarely healthy and that, if you have too many lows you could actually put on weight because of all the empty calories you take in. I mean really, no weight maintenance program in the world says you should have 2-3 juice boxes per day.  
  • I was not told that all the doctors and nurses I met would put the fear of having complications first and foremost in my mind. And that this new-found fear would make it seem like a good idea to have lots of lows if it meant avoiding highs. And that lows are really not good either.
  • I was not told that lows can happen no matter how hard you try not to have them - and that you are not a bad person or an incompetent diabetic if you have them.  
 I was not told about the ignorance I would have to face. From people I work with, or golf with, or meet at the gym. I was not told that real life doctors and nurses would ask me questions like "is your diabetes well controlled" and that it would take me several years to go from feeling guilty when asked the question to becoming an advocate and explaining patiently why this question was not at all a question they should be asking patients. And that I would have to explain it again the following year when the same doctor asks me at my annual exam. And the year after that.

I was told how to count carbs and inject insulin and treat lows. I was not told that doing all of the stuff they told me to the absolute best of my ability would not produce results anywhere near what they actually wanted to see. That there is a difference between textbook diabetes and real life diabetes. 

I was not told that there were other people like me out there. And that it might be a good idea to find some. Because they will understand all of the above.

I learned all of this on my own. In hindsight, that is probably best. I do better when I learn from experience. And I've certainly done better with every year that has gone by as I add more and more to my real-life experience purse.

But I do know that there are many people out there who may not figure this stuff out for themselves. Who may do everything they are told to do and then not understand that it is not their fault when the wheels still fall off the cart on a regular basis. Who may feel personally responsible for every low. For every high. For every up and down.

Those are the things that make me feel like we really need to take a good look at how support is provided to people.

Because while there are times when I think I am doing well because of the support I have received, more often I think I am doing well in spite of it.

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