An estimated 5 to 10 percent of people with diabetes have type 1, and most have been managing their condition since childhood. Type 1 diabetes is usually diagnosed in children and young adults, but it can occur at any age. Common symptoms of type 1 diabetes include extreme hunger or thirst, fatigue, blurry vision, and weight loss. Once diagnosed, insulin injections and other therapies can allow people with type 1 diabetes to manage their condition and lead long and active lives. Think you already know a lot about type 1 diabetes? There may be several assumptions or things you’ve heard that may not be accurate about the condition. Here are nine things that people with type 1 wish you knew.
1. Type 1 and type 2 diabetes are distinct conditions.
Diabetes is a disorder in which the body has trouble regulating blood glucose, or blood sugar, levels. The two main types of diabetes are type 1 and type 2. Type 1 diabetes is an autoimmune disease in which the immune system attacks and destroys the cells in the pancreas that make insulin. Insulin is a hormone that enables sugar to enter the bloodstream to be used by cells for energy or stored for later use. Without it, a person with type 1 diabetes can’t process glucose and their blood sugar levels can get dangerously high. Type 2 diabetes is a metabolic disorder; the pancreas still produces insulin but is unable to use it effectively or the body has developed a resistance to it. “In general, there’s not a lot of awareness about type 1 diabetes,” says Melinda Ramage, FNP-BC, a certified diabetes educator practicing in Asheville, North Carolina. “When you say diabetes, type 2 is what most people think of — that’s what the majority of the awareness campaigns have focused on. Many people falsely assume that all diabetes is the same.”
2. It can’t be cured with lifestyle changes.
As with other autoimmune disorders, the exact cause of type 1 diabetes is not known. There is no “cure” or way for a person with type 1 to eliminate their need for insulin therapy, which is an important distinction between type 1 and type 2. Morgan McKean, 29, who currently works abroad in health promotion for a charity foundation, sees a lack of knowledge about both types of diabetes. “People think only overweight people get diabetes or that you can always get rid of it through a better diet and exercise. That’s not the case in type 1, and it isn’t always true in type 2 diabetes either,” she says.
3. Yes, I can eat sugar.
“Once someone finds out about my diabetes, ‘Can you eat sugar?’ is usually the next question. That’s understandable, though it can be awkward, especially if I’m putting a donut in my mouth at the time!” says McKean.“Type 1 diabetes is about managing the ratio of sugar and insulin in the body. I can eat anything I like as long as I understand how much insulin I need to give in order to cover that food.” “For the most part, people with type 1 are taught to eat ‘normally,’ but then to make adjustments to their insulin and ‘think’ like a functioning pancreas would,” Ramage says.
4. I need to track more than just my sugar intake.
In the simplest terms, insulin keeps sugar levels regulated in the body, but managing how much insulin to take requires more than just monitoring sugar consumption. All carbohydrates need to be tracked since they are converted into glucose in the body, and exercise impacts blood sugar levels as well. “Diabetes is always in the back of my mind,” says McKean. “I have to track every bit of food and every minute of exercise. Even things like stress or being nervous can impact blood sugar.”
5. Managing type 1 diabetes takes constant work and planning — I never get a break.
“Type 1 diabetes is very unique,” says Ramage. “If I’ve been diagnosed with type 1, I’ve had one of my organs fail. And the pancreas is a vital organ, not like an appendix. It’s key for glucose metabolism, which we need to live. Imagine if my heart stopped beating properly and that every 10 beats I was the one responsible for making sure [it beat properly] … it’s of that gravity,” she says. “Diabetes never takes a break. I check my blood sugar around six times a day, and probably in the middle of the night at least three nights a week,” says McKean. “I also give insulin when I first wake up, and then anytime I eat or my blood sugar goes high during the day.” Even more taxing can be the mental energy required to manage type 1 diabetes. “There’s constant thinking that goes into diabetes — calculating how many carbs you’re eating, if it’s worth eating them, wondering if you’re a bit tired because your blood sugar is high or if you just didn’t sleep well, not to mention playing detective if your blood sugar is not what you expected,” McKean says. People with type 1 diabetes are just like the rest of us; sometimes they wish they could just relax. “My endocrinologist noted that my blood sugar levels are consistently in a good range during the week, but not so much on Saturday and Sunday,” says Grady Cecile, 45, a senior services worker in North Carolina. “I jokingly told him, ‘That’s because I don’t have diabetes on the weekend!’” In reality, having type 1 means being “on” every day of the week.
6. Please don’t tell me what I should and shouldn’t eat.
“People try to tell me all the time what I can and can’t eat,” says Cecile. “I’ll be out or at work and someone will say, ‘You can’t eat that cupcake.’ They wouldn’t dream of saying that to someone else, but because of my diabetes, they think they should tell me what to eat.” Ramage agrees: People often intervene on what would otherwise be “a stranger’s decision-making,” she says. “It goes back to that (incorrect) stigma. People think you’ve made poor choices that have led to your condition, therefore, they should share what they know to help you make better choices.”
7. I am my own toughest critic.
Even though type 1 diabetes isn’t caused by unhealthy habits, there can still be a lot of self-judgment from managing it. “Having type 1 is like being graded over and over again each day,” says McKean. “Every time I check my blood sugar, I’m finding out if I get a ‘good’ or ‘bad’ grade. There can be a lot of guilt and frustration if my blood sugar is too high or low. Why didn’t I give the right amount of insulin? How could I have gotten that wrong? What did I do yesterday that is making this happen? I must have eaten too much — how stupid! Why didn’t I feel my blood sugar dropping before now?” Goals can seem very black and white, says Ramage, and when patients don’t meet them, it can lead to shame and guilt. “As healthcare providers, we have specific sugar goals that we share with patients in order to reduce risk,” says Ramage, adding that the numbers are only one part of the bigger picture. Stress and micromanaging over hitting a number isn’t healthy either. Working with patients as individuals to gain an understanding of his or her challenges and goals can lead to better outcomes.
8. Type 1 diabetes can affect my moods and emotions.
According to the American Diabetes Association, depression is more common in people with type 1, although a study published in November 2016 in Diabetic Medicine suggests that much of what has been thought of as depression is actually emotional distress that comes with managing a demanding chronic disease. “When my sugar is really high, it can definitely affect my moods and decision making,” says Cecile. “I feel like my brain doesn’t work as well.” McKean adds: “I manage it, and generally do so with a smile, but it is a huge part of my life that can be quite difficult at times.”
9. Living with type 1 diabetes helped shape who I am.
Even though most people with type 1 diabetes wouldn’t chose to have the disease, managing it may lead to insights and a heightened awareness of the struggles everyone faces. “Diabetes has brought a lot of wonderful things into my life,” says McKean. “I am more empathetic toward anyone with a chronic condition, and I try hard to remember that you don’t usually know all that’s going on in a person’s mind, so be kind to them.” Support and relationships can grow out of a type 1 diagnosis as well. “As a kid, I attended the Florida Camp for Children and Youth with Diabetes and I went back as a counselor and volunteer for six years. I met some incredible people there and really relished the chance to be surrounded by people ’like me’, says McKean. “And as an adult I interned at a diabetes charity in the UK and met my husband there. So, I certainly can’t be too hard on the disease!”
