10 Facts To Help You Understand Type 1 Diabetes
It's Type 1 Diabetes Awareness month, and the point of this post is to help you understand Type 1 diabetes, which comprises only 5% of all diabetics, and really if we're being real, Type 1 isn't "diabetes" at all. "Diabetes" describes the result (lack of insulin) to the diseases (type 1 and type 2), not the cause. The causes are very different, and so is daily life living with it.
- Type 1 Diabetes is NOT your grandma's diabetes (unless she has Type 1). This means it isn't caused by age or lifestyle related factors. It's caused by an auto-immune response where your body's immune system mistakes the pancreas for an enemy and kills the insulin producing cells (which grow back very very slowly). Research shows that this attack continues, so that any chance of those cells growing back is gone. They don't know why this happens–some doctors believe it's caused by a virus, some believe it's environmental toxins, most say it has a genetic component, but all believe it's 100% deadly.
- Anyone at any age can get it. It used to be called Juvenile Diabetes, not because only children got it, but because we lacked a blood test to differentiate between the types, and so if you got it older, they just assumed you were Type 2. Praise Jesus for a new blood test that measures the antibodies associated with Type 1, and now they can tell the difference. This is a great thing because many adults were misdiagnosed, leading to deadly complications. Researchers know that there is a genetic component that can get turned "on" at any age, from a few months old, to your 60s and 70s.
- Yes we can eat that. Type 2 diabetics are treated with oral meds because their pancreas does work! What doesn't usually work is their own cells intaking the insulin they have, usually due to overload, which leads to something called Insulin Resistance––cutting out carbs and surgar, as well as weight loss and exercise, help this immensely. Type 1s don't make insulin, meaning we'll have to inject it. Oh, and we have have to inject insulin for other things like periods, hormone issues, flu (and other illnesses), stress, exercise, and eating protein. Basically we can eat all the things, because we'll have to inject for it anyway.
- We come in all sizes. Most Type 1s are thin at diagnosis due to rapid weightloss that goes unnoticed as diabetes. That said, many aren't, because before diagnosis they weren't thin. Also you can gain weight with type 1 the same way a normal person does...by over eating. Besides the fact that we have to be our own pancreas, we're just like you. But no matter what we weigh, losing weight will not cure us, only reduce the amount of insulin we take (because like any medication, the dosage is based on many things including weight, but we'll still have to take it.)
- Acting as an organ is hard work. 70% of my brain is dedicated to thinking through things that you will never think about like carb and fat counts, insulin ratios, basal rates, where in my period I am, how many supplies I have with me, why my blood sugar isn't going down, or why it's not going up, if I'm too stressed and should I inject for that big meeting, or work out so closely to eating, or will that make me plummet? Do I have juice boxes in the car, did I bring candy in my pursue, and is that insulin too old? How much is that copay, why won't they pay for my test strips, and do I need to go to the ER for IV fluids tonight? Every ounce of food, every function of my body, is something I have to think about and regulate.
- No, eating too much sugar doesn't give you Type 1. I was at the ER last night and a nurse asked me if I "ate too much sugar as a kid." Well, "no more than you probably did.." Which leads me to...
- Even doctors and nurses don't get this disease. Some of the most ignorant comments came from doctors who just didn't pay attention to that part of med school. Like I said, it's only 5% of Diabetics, and like 0.003 percent of the entire population of the world. So Type 1s are used to explaining this disease to everyone. In the DFW metroplex, only two endocrinologists I found specialized in it. That's low for a large city center, so imagine what it's like in rural communities. People often have to drive hundreds of miles to find good doctors for their kids.
- We need a cure. But because we're such a small part of the population, research is slow going and honestly, not prioritized. 100 years ago I'd have been dead, and while I'm grateful to modern medicine, and all the technology that keeps me alive (my husband calls me the bionic woman), we need a cure.
- Suggestions don't help. Like I said, we're used to explaining our disease, and because we act as an organ, we are highly familiar with our disease and our bodies. And most of us have tried every ridiculous treatment you can think of in hopes of finding something that makes life easier. What we would love is your kindness and empathy.
- We live a different normal than you. A trip to the ER for fluids? A bad low that caused a blackout? These are things we learn to expect, manage, anticipate, and live with. I'm used to hospitals, needles, and the idea that I could go to sleep one day and not wake up. I believe in a God who heals and protects, but denial of reality isn't faith. I live every day grateful to be here, and every day I pray for my pancreas and my immune system to finally patch up their relationship. But in the meantime, my reality looks quite different than yours, and that's okay.