Monday, October 7, 2013

Diabetes is a Piece of Cake

Diabetes presents many challenges.  There is the obvious one of trying desperately to match food to insulin while factoring in nutritional content, exercise (both past and anticipated), emotions, health, and more.  There is also a challenge in trying to get the outside world to understand that our fears and concerns are real.
Fourteen years ago, I knew nothing about diabetes. I had no idea how serious it was.  Today, my biggest challenge is getting people to understand that this invisible disease that appears to be a piece of cake to manage only looks that way because of the hard work that is put in behind the scenes.
The average person who walked by my son on the street would never know that he has lived with diabetes for almost 14 years.  He has no complications. He doesn’t have a cane or any limbs amputated. He looks like an average 16 year old male.
They might notice his insulin pump or his remote meter when he tested. If they did they would probably be amazed by the technology and think that it made life pretty easy. If they watched him eat in a restaurant, they would seriously wonder what all of the fuss was about. With the exception of the diet drink that he would order, the rest of his meal would be more than two average people would eat at one sitting and he would somehow find room for dessert! How can life be that much of a challenge?
What they don’t see is how hard it can be to make that technology  work to its very best. They don’t see the time that my son and I spend reviewing  data, discussing what happened when he went low–had he been exercising in the past 24 hours? What was his reading in the test before? Did he count the carbs properly? Did he factor in fat and extend the insulin delivery over time or simply give it all in one shot?
They don’t see us discussing highs–was there a site failure? Did he run out of insulin? Did he make a mistake in how many carbs were in his food? Did he over-treat the low that he had earlier? Did he miss a low and his body rebound with a high? Is he growing? and the list of questions goes on and on but only we hear them.
They don’t see the effort and thought that goes into every setting on his pump.  The details that I examine before inputting the amount of insulin he gets delivered into his body just so it can function.  They know nothing of the detailed calculations involved in deciding how much insulin he should get for each crumb of bread or bite of apple that passes his lips.
An average person does not realize that keeping my son alive and as healthy as he is has taken a lot of work and involved some serious stress at times.  Diabetes does not stop at night and neither do we.  My son is tested throughout the night and if he is high or low during that time, he must be treated.  Nights become more dangerous because unlike the day when he tends to notice fluctuation in his blood glucose levels, at night he will sleep through all but the most extreme highs.  Whether we are up for 15 minutes during the night or two hours, life goes on and the world does not notice what we had to do to keep my son alive and healthy.
The biggest irony of diabetes personally is that the harder you work, the more normal you look,  the more people think that you are exaggerating just how much work it takes.  Diabetes is an invisible disease.  With the exception of a blood test, a needle or a pump, no one “sees” the challenges that diabetes presents. They don’t see the hard work behind the scenes. They tend to think that you must be over-blowing the fears and concerns that you have.  They do not understand that the reason that you or your child looks so healthy is because of hard work not because diabetes is "no big deal". 
How do we change this? How do we balance getting people to understand the struggles while showing them that diabetes does not stand in the way of being who you want to be? That is yet another challenge but its a challenge that many with diabetes do daily with a strength and confidence that inspires us all. IMG_5169

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