Editor's note: We just want to thank Elizabeth for sharing her story about Type 1 diabetes on National Diabetes Day. We appreciate her honesty and admire her ability to remain as positive as she does amidst difficult circumstances.
by Elizabeth Magee, LRD
This past June was my 26th year of having Type 1 diabetes. It seems bananas to me that I’ve had it longer than I haven’t. Even though I was 15 when I found out, I don’t remember what it’s like to not deal with this. Not thinking about what I’ll eat, when I’ll eat, what activities I have for the day among hundreds of other things.
I knew one other person who had diabetes when I was diagnosed. And she moved away in 3rd grade. Funny thing, I wanted diabetes then because she got to go home to eat, and I thought that seemed like a great situation to be in.
Thanks to diabetes camp and some other random connections, I now know many people who are dealing with the same thing as me. That’s so important because it can feel like such a lonely condition to live with. No one knows just how it feels to be “high” or “low” and let me tell you, it’s miserable to be both, but low for me especially. I can’t think straight, like my thoughts just cannot fully connect; I’m more irritable and it makes me want to eat anything in sight to fix the feeling. Not to mention the fear lows bring, because the results of lows can be really scary.
Now, nothing has ever happened to me at night that I haven’t been able to treat on my own, but it makes you think twice when you’re home alone or traveling alone. What if something happens?
There are no breaks from managing diabetes. It’s ‘round the clock, zero breaks. And I think that’s the hardest part. You can’t ignore it. You always need your insulin, extra syringes, extra pump supplies, maybe a backup monitor if you use a CGM (continuous glucose monitor), and always some form of sugar.
When you don’t live with this daily, it’s hard to realize how exhausting it is to always be paying attention and be mindful of your choices. My parents didn’t know, my brother didn’t, my husband doesn’t. My daughter, who doesn’t have diabetes, is maybe the most understanding of the situation. She knows no different for me; I’ve had it her whole life and she’s watched right alongside me the time it takes to deal with this.
I tell all new patients I see to go to diabetes camp; you need those friends who have diabetes and make you feel “normal” for maybe having to stop an activity because you’re low or dropping. Or maybe picking a certain place to eat because you know how to count the carbs and how that food will affect your blood sugar. Or all the beeps, alarms, and vibrations coming from these devices we count on to help us survive and make our lives a little easier than it was 20 years ago.
You need an outlet, someone who gets it, because sometimes you just need to complain, cry, or scream about all the kinks diabetes is throwing in your life. And for me, that helps. I still have it, I choose to not ignore it because I’m trying to live a long, normal life. But diabetes has moments when it tries to win. You just must push to be the stronger, louder voice fighting to say, “You can do this!”
Elizabeth Magee is a licensed registered dietitian. Her posts appear monthly on OYT.
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