I shouldn't expect people to understand. If you don't have Type 1 or aren't directly affected by someone with Type 1, how could you understand?
What I cannot stand is when people say "I don't see it as a big deal. I know plenty of people with Type one who have had it forever and they're doing fine."
Okay. Great for your friends. I'm glad they are managing their diabetes. However, here's a few things to consider:
1. Some people who have Type 2 think they have Type 1 because they don't know the difference between the two types. So it's possible that your friends with "Type 1" actually have "Type 2," so sure, I can see how they'd be doing great. With some thorough management of diet, along with exercise, and potentially some medicine, they could be doing super.
2. If your friends have had Type 1 "forever" then they've probably had it since before the invention of the blood glucose meter, ketone strips, insulin pumps, multiple daily injection insulin treatment, continuous glucose monitors, etc. Therefore, if your friends had to count carbs, inject insulin once a day, and then potentially boil urine to see if ketones were present, then it very well could have seemed like "no big deal" but I doubt it. I'm sure to that person who has Type 1, and to their parents, diabetes management was and IS a big deal. My grandparents tell me that I have so much more to do on a day to day basis than they had to do each day when my aunt was a young girl diagnosed with Type 1. That doesn't mean that their day to day lives weren't hard and filled with confusion while they were taking care of my aunt. I call on them frequently to ask advice, and even to vent when other people just don't get it. This is hard! And by the time Michael has had Type 1 "forever" then I think we'll find it to be easier. But right now, it's new and it's a life changer.
3. The point that families who deal with Type 1 want to get across is that those who have Type 1 should be treated as "normal" people. But don't confuse normal with "no big deal." If you think that a Type 1 person is "just like everyone else" then that family has succeeded in showing you that a disability doesn't define a person. But never for a second assume that that individual's life or the life of their family is easy or that there's nothing to this diabetes stuff. This is a full-time job at keeping someone alive. Don't underestimate that. You will never see the ins and outs of diabetes management unless you are directly affected by it. You might occasionally see a blood sugar check, or perhaps an insulin injection. But you're probably not silently counting carbs, doing mathematical equations and ratios in spiral notebooks to find out how much insulin to give, analyzing amounts of exercise to determine if an extra snack needs to be given, waking up at 2am to do a blood sugar check to make sure that the blood sugar isn't dropping too low or climbing too high, eating within a certain amount of time so that the insulin can meet up with the carbs appropriately, preparing documents and binders and gathering supplies for daycares or schools or work sites, etc. This is only a part of things that families of those with Type 1 go through DAY TO DAY.
Don't underestimate this disease. Don't think that parents of Type 1 kids are overreacting when we count carbs and worry that our child will drop too low during a nap. When our child wakes up, we praise God. And yes, most of the time, everything works out fine but that's because we are working to make it so. This isn't a walk in the park. It's a roller coaster that you can't get off of.
And I know that my son will be okay. But I also know that it will take diligence and work to make that true. I'm not afraid of diligence nor hard work. I have great parents and they taught me those things well. I'm blessed to have a husband who has just as much of a work ethic. We work together to make sure our child is doing well. I know that not everyone has the support system we do, and I'm grateful for what we have. But understand, this is not an easy disease to control. Control is such a subjective term. And I don't like people to assume I'm overreacting when I'm busy keeping my child alive.
So, the next time you come in contact with a family who is dealing with Type 1, view that particular individual just like everyone else. Because he or she is like everyone else. But don't think that they've got no worries internally. They do-- you just can't see them. And they probably don't want you to.
Until next time,
Much love, Reba