True Story: I Have Type 1 Diabetes

This is one of many True Story interviews in which we talk to people who have experienced interesting/challenging/amazing things.  This is the story of Allison and her diagnosis with Type 1 Diabetes.
 

Tell us a bit about yourself!
My name is Allison, I’m 28 and I was diagnosed with type 1 diabetes when I was 8 years old. I live just outside NYC with my husband and I currently go to school full-time. I’m pursuing my Master’s degree in Nutrition and plan to become a Certified Diabetes Educator.
For those of us who don’t know, what is type 1 diabetes? And how is it different from type 2?
Type 1 diabetes is an autoimmune disease where the immune system attacks the beta cells in the pancreas rendering it unable to produce insulin, which allows your cells to use glucose as energy. You cannot survive without insulin, so you take it either through injections or with an insulin pump. Type 2 diabetes is a metabolic disease where the body either doesn’t make enough insulin or doesn’t use it very well. Type 1 diabetes can also happen at any age — even in adults!
A common misconception about type 2 diabetes is that it’s caused by obesity. Type 2 diabetes is heavily influenced by genetics. You could think of obesity as the trigger. Type 2 diabetes can’t be cured either. You can usually prevent type 2 diabetes, but if you have it, you’ll always have it even if you lose weight. That’s because if you gain the weight back, the diabetes comes right back!
How old were you when you were diagnosed?
I was 8 years old. I had the classic symptoms like frequent thirst, frequent urination and losing weight. I woke up roughly 4 times every night to pee! My mom spoke to the doctor and I was tested for diabetes.
How do you treat your diabetes?
I wear an insulin pump. Insulin pumps are great because you don’t have to take shots, and there is more flexibility in the amount of insulin you can take. Whether you wear a pump or take shots, modern insulins allow you to match your insulin to your food so that you can basically (within reason!) eat what you want. But it isn’t perfect because artificial insulin works much slower than natural insulin, so we still deal with blood sugar spikes.
I also test my blood sugar with a glucose meter and wear a continuous glucose monitor. A CGM acts as the “movie” of my blood sugar, where as the meter is more of a “snapshot.” However, CGMs aren’t 100% accurate, so we still use a glucose meter.
How does if affect your day-to-day life?
Blood sugar management is extremely complicated. Blood sugars constantly fluctuate with food, insulin, exercise, hormones… You can do the same thing everyday, and have different results! It’s very confusing.
Diabetes doesn’t stop me from doing anything, but it takes more preparation. I have to do all kinds of mental calculations to try to ward off anything unexpected. My friend describes it like trying to be your own pacemaker. You have to constantly adjust your heart rate every minute to account for what you are doing. Think it would be hard? It is!
How have the people in your life reacted to it?
My friends and family are very supportive and help me when I ask for it (although I’m pretty self-sufficient). I rarely get any comments or stares from strangers, but I’m always willing to explain what I’m doing. I think that’s the best way to approach it. Show your curiosity about something, but don’t make any assumptions that you know more than the person with diabetes.
I definitely test my blood sugar and take my insulin in public. Diabetes is hard enough without having to worry about other people. I’m doing what is best for me, so if you don’t like it, look the other way!
Will diabetes affect your life in the longterm?
My chances of having a normal lifespan are pretty good. However, diabetes complications, like kidney disease and retinopathy, are always out there. You can take great care of yourself and still get them, and you can take crappy care of yourself and not get them! Of course, the more you take care of yourself, the better your odds, so that’s what I do. I regularly have labs done to make sure I’m doing OK and so far so good!
Diabetes can be passed down, but there is only a 4% chance in moms and 7% in dads! I know a lot of parents who have diabetes and their kids don’t have diabetes. I don’t plan on letting diabetes dictate my childbearing decisions.
Pregnancy with diabetes itself is very difficult, which is why many women choose not to do it. Diabetes can cause fetal complications and large babies, so women spend a lot of time managing their diabetes. The average woman goes from testing her blood sugar 5-8 times a day up to 15-20 times a day! It’s a lot of pressure when you’re responsible not just for your health, but for a very teeny, sensitive baby.
What advice would you give to others who have been diagnosed with type 1 diabetes?
When I meet newly diagnosed adults, the common theme in their reaction is what a huge adjustment it is. My advice is to get out there and meet others who have it. It can seem strange to admit that you’re “sick” but it’s honestly the best thing. Diabetes is one of the few diseases that’s really managed primarily by the patient, not the doctor, and there is a steep learning curve. Those who have been there can help answer some of the more personal, awkward questions about everyday life.
Diabetes social networks like TuDiabetes.org are a great place to find people, as well as blogs and Twitter. Every Wednesday night at 9pm EST there is a tweet chat using the hashtag #dsma, which stands for Diabetes Social Media Advocacy. It’s a great way to learn from others, even if you just lurk!Thanks so much for sharing, Allison!  Do any of you guys have diabetes?  Any tips to share?

 
photo by jill a brown, cc

6 Comments

Sky

Thanks for sharing, Allison! My baby brother was diagnosed with diabetes when he was 3 and it was a very scary time for all of us. We thought he had the stomach bug and by the time we ended up in the ER, his blood sugar was 1500. None of the doctors could believe that he was still alive. He's doing much better now – he has an insulin pump and at 7, he's gotten very good at using it and making sure he takes his sugar regularly.

I really appreciate you posting this – I really wish there was more awareness for Type 1 Diabetes out there!

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Anonymous

Great read: Im in Melbourne Australia, our son was also diagnosed at age 8, he is now 12, Type 1 is still a very silent medical condition, awareness most certainly needs improving – huge Diabetes news and awareness of the "other" diabetes but many just dont understand the huge difference until it touches ones life, thank you for sharing your story xx

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melinda

Great interview! It is so amazing how much medicine has changed in the past few years. My mom was diagnosed with type 1 diabetes at age 12 and was told she'd be lucky to see her thirties and would never have children. But obviously, I exist so they were very wrong 🙂 Thank you for sharing, Allison!

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Hormell's

I'm also a Type 1 Diabetic and I appreciate you getting some awareness out there. It gets so annoying that Type 2 Diabetes is such a commercialized disease that everyone just assumes you ate too much sugar and now you're diabetic. It's really crazy how little people know about being this horrible disease that affects everything I do. I also had no idea about the social networking and I plan on looking that up! Thanks!

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