Tuesday, August 2, 2016

So Your Character is Type 1 Diabetic ... Featuring Ely @ Teas and Titles + Lillian Taylor

I thankfully do not have diabetes, but I have known a few people who have had it, including a relative. Though, I wasn't close with any of this people, so I didn't know much about the disease. The only movie I'd ever seen it portrayed in was Steel Magnolias, hence the picture above. Admittedly, I did actually believe in some of the stereotypes Ely has mentioned, so this post has been very enlightening and this So Your Character Is ... post will in turn be immeasurably helpful for anyone writing a diabetic character.

So Your Character Is ... is an on going series where I interview or talk about myself about different people groups, countries, etc. for writing more accurate characters. I plan to start doing a few of these on Tuesdays, and this is the first of the Tuesday So Your Character is ... Yay! In this edition Ely is going to be talking about how it is to live with Type One Diabetes. If you haven't remembered, I also had her for the So Your Character is From Australia ... post. As with everyone whom I've had on the blog to talk about tough subjects like this, I commend her for her honesty and I'm very happy to have her today on the blog. 

Let's welcome Ely!

Edit: Lillian has also come to offer up her knowledge to the post as well!

(Images aren't mine)

Hi, I’m Ely. I blog over at Tea & Titles. I’m from Melbourne, Australia and my hobbies are reading and writing. I was diagnosed with Type One Diabetes almost seven years ago. 

I’m Lillian, a homeschooler, writer, black-belt, and type 1 diabetic. I’m from the northeastern USA, and I was diagnosed with T1D when I was seven years old. September 2017 will be my 11th anniversary with it. Aside from my own experience, I recently volunteered as a counselor at Keystone Diabetic Kids Camp, a week-long summer camp for kids with T1D. I’ve had my share of highs and lows with T1D throughout my life, but I’m in a good spot right now, so I’d like to share what it’s like to live with and accept type 1 diabetes.
Pinterest//Keystone Diabetic Kids Camp Facebook Page & Website

How does your diabetes physically feel? How do you think it compares to those who don’t have this diabetes?
Ely: A vast majority of the time, my diabetes makes me feel awful. I’m constantly feeling ill in some way—headaches, shakiness, irritability, lightheadedness—these are all symptoms. On top of that, studies show that diabetics quite often develop anxiety and depression as a result. It’s a lot of stress on your body and mind, and it’s almost impossible to distance yourself from that. I live in constant fear of my diabetes. There is so much that can go wrong—comas, loss of eyesight, loss of limbs, organ failure. We are constantly bombarded with this by our doctors, which doesn’t help at all.

Lillian: Sometimes I feel just fine, but most of the time, I feel pretty bad. Every diabetic suffers different symptoms, and it can be really hard to tell whether you feel bad from an oncoming cold or a fluctuating blood glucose.

When my blood glucose/blood sugar/BG is high, above 140 MG/DL, my mood swings like a kite on a windy day. Usually I’m very crabby, and I don’t care why. I’ll get extremely thirsty, have to pee often, have an awful taste in my mouth, and get a lot of headaches.

When my BG is low, below 80 MG/DL, I can’t focus. Most people get very quiet, but I get super giddy. My introverted self just can’t stop talking. I get hot and cold flashes every few seconds. I get vertigo, grow exhausted quickly, and have trouble remembering things.

Worst of all is when my BG is fluctuating. We call this “the roller coaster”, because a rapidly rising and falling BG tends to look like one on paper. Unfortunately, it also feels like you’re actually on a roller coaster while your feet are planted on the ground. This brings on my worst cold flashes and vertigo.

How do you feel about your diabetes?
Ely: I wish I could be positive about this, but honestly, I hate it. The main reason for that is because people have such damaging preconceptions about it. I’m constantly told that I’m ‘not fat’, or asked whether I ‘ate too much sugar’ or I’m told by people ‘you can’t eat that’. I don’t want to be rude, but I know what I’m doing better than you do.

Lillian: Honestly, I used to hate it. Diabetes takes over everything in your life, and it’s not nice about it. Sometimes I’ll be scared to go to sleep because I might never wake up again. I can’t do activities with my friends when my BG is already low. Cereal isn’t a breakfast food for me anymore, because my BG spikes incredibly high from it no matter how much insulin I give.

But my mindset’s changed a bit in the past few years.

Diabetes has shown me how hard life can be, but I’m still here. Every day I wake up ready for a fight against my own body, but it’s made me stronger. Without diabetes, I would never have met my best friends. I wouldn’t have met the hundreds of great people at diabetes camp, who face the same struggles as me and encourage me to keep fighting, who are always there for me on the bad days. Most of all, diabetes has made me a strong, compassionate person who never gives up against long odds, and I can’t imagine being half the woman I am now without it.

I don’t love my diabetes, but I love who it has made me become. I’m okay with that.

What challenges does your diabetes pose?
Ely: My diabetes controls my life. I’ve missed on a lot because of it. While most diabetics are allowed to drink, it personally affects my health too much to do so. As a 20 year old, that seriously takes away from my social life. I also have to have a certain amount of meals a day at pretty specific times too, which means I have to always think about food whenever I’m out. The health issues and stigma attached are also a huge challenge.

Lillian: Eating, sleeping, exercising, sickness, even writing poses a challenge. Think writer’s block is bad? Reaching a great scene only to stop for a low BG is so frustrating.

I have to calculate how many carbohydrates—not sugars—are in everything I eat. Sometimes it’s as easy as checking the nutrition information on the box, but not everything comes in boxes or labelled bags, and I have to guess. The only way to get good at guesstimating carb counts is experience. Eating out is a real pain. Restaurants are required to keep all their nutritional information available, but I’ve found their carb counts aren’t always accurate.

Then I have to calculate how much insulin to bolus for those carbs. Some people bolus with shots, but I have an insulin pump. Pumps reduce the number of shots because you basically just push a few buttons to inject the insulin, but you still need to change them every few days, and they can malfunction.

Anytime I exercise or leave the house, I need to plan what I’m doing to make sure my BG doesn’t crash or skyrocket. It’s a real pain to sit on the sidelines because you’re low and watch everyone else have fun. Nighttime requires even more preparation, because I won’t normally wake up if something goes wrong. Dropping too low can quickly be fatal, but constantly high BGs can lead to serious health problems later in life.

Is there anything you like about your diabetes?
Ely: Honestly, no. There isn’t really any upside to diabetes at all. I wish I could sugarcoat it for you all, but it’s pretty dull.

Lillian: I like how strong it’s made me and the people I’ve met because of it.

Literally nothing else.

Do you think your day differs from others because of your diabetes?
Ely: Oh yeah. Diabetes is a 24/7 illness. There is no break from it. I have to test my blood sugars four times a day, as well as inject myself the same amount of times. I have to watch what I eat, drink, do and feel every second of the day. Diabetes is my life.

Lillian: I try to check my blood at least eight times a day. I have a continuous glucose monitor, or CGM, which helps me watch my fluctuations, but I feel better when I keep tight control, which means lots of BG checks. I use small lancets to check my BG through my fingers and my palms. Yes, it hurts. I have visible calluses and scars on my fingertips from ten and a half years of daily pokes.

T1Ds often feel lonely, because diabetes is a very personal disease. Paying so much attention to your health every minute of the day with no breaks is exhausting. People without diabetes, even if they live with someone who has it, often don’t understand how difficult it is to get through each day.

My insulin pump beeps all the time to let me know when my insulin basal (how much insulin it delivers throughout the day) changes, when the battery’s almost dead, or when there’s something wrong with my pump. I have the Omnipod pump, and it’s pretty loud. I don’t notice it much anymore, but I can assure you, other people do. Try walking through a library with your insulin pump trying out for a marching band.

Do you have any cultural differences between others who also have your diabetes and those who do not?
Ely: Freedom is a huge one. Like I just mentioned, there is no escape from diabetes. I envy people who can eat something without counting the amount of carbs in it, or trying to guess why on earth my blood sugars are so high.

Lillian: Yes. Our everyday life is very different from others’. We do everything we do with one goal in mind—survive the day without feeling too horrible. When we try to be “normal” and ignore our diabetes for even a few hours, the results can be devastating.

A few months ago I went to a diabetes camp; it was my seventh year there, but my first as a counselor. The dietician intern in my cabin told me even though her father has T1D, being at camp really opened her eyes.

What are some stereotypes about your diabetes that irk you?
Ely: The ‘fat’ one is a big one. Type One Diabetes has nothing to do with weight, or sugar consumption. Another one that is quite popular is the ‘I could never do that’ line. I understand–the idea of injecting yourself is scary, but please think before you say it. We don’t get a choice whether we do this or not—it’s inject, or die.  

Lillian: The better question is “which ones don’t?” All stereotypes are harmful, but when we’re talking about someone’s life, incorrect assumptions can kill.

People with T1D can eat sugar. We can eat anything we like, just like you—we just have to bolus for it. I once had four donuts in one meal. (Saturday morning science experiment. Don’t ask.) Did I regret it? Oh yes. Did my BG suffer for it? Well, yes. I miscounted the carbs. But is it why I was diagnosed? Not at all.

Type 1 diabetes is thought to be caused by a combination of genetic probability and a stress trigger, like a bad virus or a sudden change in lifestyle. A person cannot cause themselves to get T1D by any means. It’s an autoimmune disease, so if someone in your family has one, it’s more likely you’ll get one too—like type 1 diabetes, celiac disease, hyper/hypothyroid, and rheumatoid arthritis. The beta cells in your pancreas, which create insulin, suddenly destroy each other, which means your body cannot create insulin anymore. You need to regulate it manually, with shots/insulin pumps and BG checks.

What media portrays your diabetes badly be it a movie, a book, or a TV show?
Ely: Almost everything I’ve ever seen. A lot of people aren’t aware of the difference between Type One and Type Two Diabetes. Type Two is about healthy eating, and exercise mostly, and while Type One involves that too—the insulin injections make up a big part. The two types often get lumped together as ‘diabetes’.

Lillian: Well, this is tricky. I haven’t ever seen type 1 mentioned in anything, but I see type 2 everywhere, and it’s never specified which type it is. I mean, T1Ds know, because 1.) it’s never about us anyway, 2.) pills/diet change/exercise/cinnamon/whatever don’t help us, and 3.) food doesn’t cause it. So basically anytime diabetes is ever mentioned, but there’s no type attached to the front, it’s a problem.

If you were wondering what the difference is, a T1D’s pancreas no longer produces insulin. A type 2 diabetic’s body is insulin resistant.

What media portrays your diabetes well be it a movie, a book, or a TV show?
Ely: I’ve never read or seen anything with a realistic representation of diabetes. It’s not often included in fiction the way that things like cancer and depression are. While those are both important topics and issues, millions of people have diabetes to—we’re just as important. 

Lillian: I have never seen or read anything fictional with type 1 diabetes in it, except for one of those little kid books about so-and-so’s first summer camp. I figure most of you are no longer going to elementary-age baseball camp, so please forgive me if I don’t bother to dig it out of storage.

Who are your top three favorite characters who also have diabetes in books, movies, or shows?
Ely: As above.

Lillian: Again, I’ve never seen any books, movies, or shows featuring a type 1 diabetic. (Unless my manuscripts count, in which case…yes, I have a favorite. You just won’t know him.) 

Thank you again, Ely and Lillian, for your transparency! This is such a wealth of information! Thanks for reading! Don't miss So Your Character is From Thailand ... later this month!

Are you interested in participating in this project? Shoot me an email at howellvictoriagrace(a)gmail.com.

Do you have any diabetic characters? Did this inspire you to write a character with diabetes? Do you have diabetes and you have further input? Feel free to share! Do you have any questions for Ely? Be sure to thank her!

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