Cheers to Three Years

Three years ago today, I went to the doctor with my mom, thinking my mono had relapsed. I didn’t get to see my normal doctor because we had called in too late, but I just wanted to know what was wrong, and even prove that I was actually sick and not just staying out too late every night. This new doctor did all the standard tests, came back in the room, her face looked grim, so there I was thinking, “I told you, mom! My mono is back and now I can’t train for another couple weeks.” But instead I heard, “You have type 1 diabetes, and you need to get to the hospital.” After a brief explanation and learning that her child has type 1 diabetes, I thought I would never be able to eat carbs again, so I asked if I could eat a baked potato before I went and she said yes only because it was too bad already. My mom filled my car with gas because she felt badly for not taking me to the doctor earlier (who would’ve thought I’d have diabetes though, it wasn’t her fault), we went home and packed, I ate my baked potato, and we headed to Children’s.

So a few weeks ago, I emailed the American Diabetes Association this long e-mail about differentiating between type 1 and type 2 diabetes. I also went on to tell them that I didn’t understand how they expected support for all these Acts, and legislation, and research if there wasn’t anyone out there advocating for what it’s like to have type 1 diabetes. I got a response from them later that day that said something along the lines of, “Thank you for contacting us. What is your question exactly?” So for those of you who might’ve recently been diagnosed, or those of you who would like to make a difference in peoples’ lives, I’m going to tell you what it’s like with Type 1 diabetes.

Let’s start with the hospital.

I am incredibly lucky to live so close to such a high quality hospital. I don’t remember a whole lot of the beginning of the experience in the hospital, but I know I spent a while in ICU. Once I was out and I was put in a normal overnight room, that’s when all the standard procedures started. While you’re in the hospital you have to meet with a nutritionist, a social worker, and an educator.

I remember the nutritionist being super nice and kind, but meeting with her was I think the only time my dad actually got upset while we were at the hospital. I was going through these sessions with a little boy who had just gotten diagnosed and his family, but he had a problem of sneaking pop-tarts apparently. My family and I sat there trying to explain to this lady that I needed more carbs than just a few per meal. She couldn’t wrap her head around how intensive my training for soccer was and continued to tell us that I should be eating by this particular meal plan and we all just knew it wasn’t enough.

The social worker was an older woman who I think spent too much time in the court rooms and suing people. She spent so long emphasizing to our parents the importance of making sure we get equal treatment, equal job opportunities, testing scenarios, etc. But the thing was, she and all of the hospital staff kept telling us that we would be normal. I was at the age where I could recognize if someone is saying that I need to stand up for my equal rights, I was not going to be normal.

The educator was also really nice, I think that must be a characteristic you have to have to work at Children’s. There was a day that we spent hours with her, getting our lunches delivered there and our dinners. It’s really confusing because she would keep repeating, “you’re going to have a normal life, you’re just like every other kid.” But then she would tell us that we would have to take shots for every meal, but they had to be three hours apart, and if anyone else took a shot of our insulin they would die, or if we didn’t give ourselves shots, we would die. What’s normal about that? At one point it was all so overwhelming, I told her I had to leave the room, and my mom followed, and I cried to her in our hospital room. My favorite nurse came in asking what I wanted, if there was anything she could do, and I said “I just want chicken fingers.” I was tired of getting yelled at cause I said I wanted macaroni and cheese but then it was gross so I didn’t want to eat it, but I was learning I had to. I went back to the educator’s room, and I got chicken fingers delivered to me… two packets of ketchup only though.

There was a theme as you go through the hospital. Every one there will tell you, “You can do anything anyone else can do. You’re just like everyone else.” But this is a lie, unfortunately. After they tell you that, they’ll tell you how a different way your life is changing.

How Type 1 Diabetes Affects you Mentally.

There are many type 1 diabetics who were diagnosed and they were able to tell the doctors that there is a family history, so it makes sense. Then there’s type 1 diabetics with no family history and they’re diagnosed knowing nothing. I don’t know what it’s like to be diagnosed and have a slight understanding of what was going to happen. But when you get diagnosed and you don’t even know what diabetes is, it just doesn’t make sense. It’s hard to sit there and wonder why you were the one who got it if no one else in your family has it. I recently met an 11 year old girl who was diagnosed at an early age, and she was so embarrassed that her parents had to tell me she was diabetic. At that age, everything is embarrassing so can you imagine having to take out a needle during lunch in the cafeteria of school and having to give yourself a shot? Or having to pull out a meter and prick your finger multiple times a day? I sure can’t. High school was bad enough with everyone staring and everyone asking questions, I think it would be worse in middle school when you’re going through so many other changes too.

Besides that, people have to understand that controlling your diabetes doesn’t mean that your numbers are always perfect. Sometimes you’ll randomly be 260 or you’ll be 50 and there’s nothing that you did to cause that. But sitting in class when you start to feel a low blood sugar is horrible. You begin sweating, losing feeling in your fingers, lips, tongue, and toes, you start to shake, but the worst part is knowing that you need to check your blood sugar and you need to eat or drink something, and you physically can’t. It takes everything you have to concentrate enough to stay with it for the next two minutes and pull our your meter and keep your head up. But sitting in class with a high blood sugar is completely different. You get really hot, and really tired. But it’s not a normal tired where you just really need some coffee or a 15 minute power nap. Everything goes out of perspective and you’re just staring. It’s hard because sometimes it’s really hard to recognize a high blood sugar. You really just sit in class and it’s like you can be told to copy down a sentence, and you know you’re supposed to be writing down this sentence, but you just can’t. You’re body is just a lump.

How Type 1 Diabetes Affects you Emotionally.

When I left the hospital, I wasn’t expecting to go home and just go on living how I had before, it had been made obvious that even though I was “normal,” my life wouldn’t be. I also didn’t expect my diagnosis to be as emotional as it was. It’s hard to deal with though, going from crying from getting a flu shot to having to give yourself shots multiple times a day. That’s a hard barrier to get over. As a parent, it seems really hard for a birthday party to come around and have to explain to your kid that they can have  some cake or ice cream, but they shouldn’t have too much. It’s almost like dieting, where you have to have a good mentality in knowing what you should and shouldn’t eat at what times even though you can technically eat anything. It’s also hard to get over going to school and you might have to go to the nurse before or after lunch, you have to give yourself a shot at lunch, you have to check you blood sugar numerous times a day. As a kid, it’s hard to deal with those stares and those questions. And if a child has a pump, especially girls, you have to buy certain clothes that you know you can hide it. You have to find dresses that are particular so your pump isn’t just sticking out. Growing up with diabetes is one more thing kids have to ask about, ask why they aren’t like their friends, and cry when they can’t buy their favorite dress because their pump sticks out. Or when they go on their first date they have to explain everything because they have to prick their finger and maybe give themselves a shot.

How Type 1 Diabetes Affects you Spiritually.

It’s really easy to be angry at God when you’re diagnosed with type 1 diabetes. You’ve been told there’s this omniscient God out there looking out for you, but then you get diabetes and it’s like, “What did I do wrong?” It’s so easy for us to feel like good things happen to us when we’ve done something good, like a good deed, and then it’s easy to think that when something bad happens, it’s because we did something bad, like we’re being punished. Well getting diabetes is a big punishment if you look at it that way. It’s constantly asking why God hates you, or why God chose you to have to deal with diabetes and not someone else who breaks the law or something. It’s easy to hate God for making you live with this horrible disease. I think it’s so important to tell these people that they aren’t getting punished, they just got diabetes. It’s not because they didn’t help the old lady across the street or they stole a piece of candy from the jar after their parents said no, it just happened. And it’s important to tell them that God is still with them, because He is! In so many cases, isn’t it miraculous that this person got to the hospital on time? You have diabetes, you have to deal with it, but you don’t have to deal with it alone.

Daily Life.

Many people don’t realize that people with Type 1 diabetes did nothing wrong. It wasn’t that they didn’t eat properly as a child or they didn’t go outside and run enough. But many people also do not realize that this can be a fatal disease. My life is in my hands everyday. I have to choose to make the right decisions about not eating 3 pieces of cake, but also choosing to give myself insulin when I do eat. It’s easy to forget, and it’s easy to make a mistake. But one mistake can lead to terrible consequences. I’m lucky in that I now have Obamacare as a fallback insurance if I were to choose a career that didn’t provide me with insurance. In many ways, I can do what everyone else does. But it’ll be a little different. I can still play soccer in college, but I might have to stop at practice for a few minutes and get my blood sugar in check. Type 1 diabetes is a prominent enough disease in America that more people should know what it is and what it’s like.