“You don’t look like a diabetic! You look healthy and fit.”
“Thank you, I’m a type 1. Some of that is a bit more commonly seen in type 2. They’re very different diseases.”
“Ya, but you don’t look sickly.”
This is a real-life conversation I had just last week. I wish it were the first time I’ve had a conversation like this. Often the convo includes the fact I’m not overweight. Sometimes there are references to the cake I’m eating at a birthday party. But it all boils down to the same thing — these things aren’t compliments while the person on the other side is often attempting to offer such.
I am lucky to have a controllable chronic illness. *Note, I didn’t say curable or even easy to control.* But it’s one autoimmune disease that 1.25 million Americans live with. But, too, it’s not one you can quickly see. It is one that in my adult years, more than younger years, I’ve grown to hear the lack of education around type 1 diabetes.
In the workplace — in life — everyone you encounter is battling something. It’s good to be educated and curious. I encourage everyone to ask me questions about Type 1. I have my story below, but first to review some diabetes 101, seeing as November is Diabetes Awareness month.
Diabetes is a result of something ‘not right’ in the pancreas/body’s response to the pancreas produced insulin.
Type 1 Diabetes — often referred to as Juvenile Diabetes, although it can be diagnosed at any age — is for most is a result of the body’s immune system attacking the pancreas causing it to stop making insulin. It’s considered genetic, although it’s still being researched as to the exact causes.
Insulin is necessary to control blood glucose levels. Type 1 diabetics are required to take insulin through other means like daily shots, insulin pumps, or insulin pods. (I wear an insulin pump.)
Counting carbs allows type 1s to properly account for the amount of insulin they need to take when eating. Those type 1s on a more restricted diet are a result of their established treatment method with their endocrinologist.
Type 2 Diabetes — while it can ‘run in the family’ is a result of the body becoming resistant to the insulin/amount of insulin that the pancreas produces. The body doesn’t respond as it should to the insulin for a variety of reasons.
With diet changes, increases in exercise, and general lifestyle changes, many people with type 2 can avoid going on medication. Oral medication is a standard treatment, as well as insulin injections to supplement the body’s insulin production.
My diagnosis story (taken from a blog I wrote in 2011 to encourage people to take a test for their risk level of diabetes):
When I was 5-years-old, I broke my arm in three places in late August. Random-freak kid accident where I fell off a swing. In hindsight, my diabetic story starts here, but that’s what it is hindsight… not what anyone thought at the time. When I was 5, I was just another kid with a broken arm. My arm took a longer time than usual to heal. I went through multiple casts through the duration of kindergarten, and actually had to learn to write and use scissors with my left hand! (I’m right-handed.) All-in-all, good six-plus months for my arm to heal.
Fast forward only a few months to the summer of 1994. I’m 6-years-old and while on a week vacation at my Oma’s (grandma) house, I got pretty sick and un-6-year-old like. While my Oma lives 3 hours away, she decided to schedule me a doctor’s appointment in her hometown to see if maybe I just had a summertime flu. At the appointment, they discuss running some blood tests; however, I ate that morning, so realistically the tests might not be accurate. The doctor sends us home, tells my Oma to keep an eye on me, and if it keeps up to get me in at my home physician.
When my parents pick up my sisters and me at the end of the week, it’s clear I’m not better. They call my doctor, tell the office my symptoms, tired, losing weight, can’t keep anything down. The doctor’s office schedules me for their soonest appointment which is weeks away and instructs my parents to keep me hydrated, give me Gatorade. I live on the couch for the weeks up to the appointment, continually drinking Gatorade and continually throwing up. By the time the appointment rolls around, I can’t even walk into the doctor’s office and I weight less than 40 lbs.
Dr. Burke quickly called in the life flight team (helicopter ambulance) seeing that there is something seriously wrong. While doctors and nurses begin checking every possible cause, my mom suggests to check me for “sugar” as it runs in the family. One little blood test and they are certain that is the cause. With a blood sugar level of 811, I’m loaded into a helicopter equipped with a flying bunny to be my companion, yet quickly slip off into a coma.
After 3 days, I woke up. I was terrified, in the ICU at Geisinger Hospital in Danville, and wanted only my Mom and Dad. I had a great doctor and diabetes educator (Dr. David Langdon and C.D.E. Jane Evans) there every step of the way to equip my parents and me to go home and face the challenges of diabetes. I practiced giving shots to an orange, my parents, heck probably even my 2 sisters who were not even in their teens. I learned the correct way to poke my finger and have it get enough blood but hurt the least. I learned to measure out foods in my hand and know the value of carbs. All as a 6-year-old.
While my parents controlled and monitored my diabetes every step of the way, very early on they let me take control of the daily tasks on my own. Their philosophy was I was the one who had to live with diabetes, I needed to be able to test my own sugar, take my own shots. I returned to school, missing at least the first month, and found that being diabetic was kind of “cool.” Every day I got to have two snacks at school. (I LOVE snacks!) I had a watch that would cock-a-doodle-do when it was time to check my sugar. Every time I had to check my sugar I would go from group to group so the kids could all take turns watching me. While surely no one envied me, I wasn’t chastised by the other first graders. And luckily that would continue throughout my entire school career.
At the same time, those first few years especially weren’t all fun and games. There would be days in gym class where I would have to sit out because my sugar got low, or in a few cases in the early years, the nurse would have to come get me from class because I was close to passing out. When my sugar was high, I would be sent to walk the halls with a friend and drink water (which usually wasn’t something anyone minded!). But these differences didn’t last all that long and became less and less common after I left elementary behind.
In no way have I ever considered diabetes to restrict or hold me back. I played soccer competitively, run, play sports, went to college, gone on vacations and trips without my parents growing up. I eat candy (maybe even more than a non-diabetic) and LOVE cake and ice cream! I can skip any meal I want, or pig out at all-you-can-eat buffets. I hate sugar-free candy and rarely eat it. I don’t order a diet soda when I’m out. Technology and medical advancements have come so far, that as long as I can count the carbohydrates in any given food, I can eat, or not eat, whatever I want. I wear an insulin pump (and now a continuous glucose monitor for the past 3 years) that makes my life even easier.
My story isn’t a complex-sad one I like to think. And really, I don’t even look at it as an overly inspiring and motivating one. I look at it as a story of a challenge that was thrown at me that I’ve managed, with help from a lot of people. It’s just part of what makes me me.
Type 2 diabetes isn’t the same as type 1. However, the great difference between me and a type 2, is a type 2 can prevent from ever facing many of the challenges I face. I. If the signs are caught early on, the risk can be minimized. So I encourage you to take the test. Maybe I make diabetes sound not to bad, but it is still something I wouldn’t wish upon anyone. And if I can help keep the diagnosis from occurring for even one person, then I helped stop diabetes.
There are plenty of online tests to help you determine if you’re at risk for diabetes. They’re a start if you’re not ready to go to the doctor just yet (but be warned, I have taken lots of them and come back as a ‘low risk’). The best thing you can do is talk to your doctor. Know the signs. And ask questions to people like me that gladly will share the trials and triumphs of living with this disease.
But, keep in mind, diabetes is just one of the millions of diseases that cannot be seen. Be the change in your workplace, friend circle, community, that asks questions. That listens when someone shares. Don’t assume a fit, happy human isn’t fighting some sort of battle — with their body, with insurance companies, with pharma companies — and making continual decisions every minute of every day on how to stay alive.