27 Things No One Tells You About Having Diabetes
This is what living with diabetes is really like.
There are an estimated 30.3 million Americans living with diabetes, according to the Centers for Disease Control and Prevention's (CDC) National Diabetes Statistics Report for 2017. And yet, the average person knows very little about the realities of life with this chronic condition—which is not easy (or cheap) to manage, by any means.
Diabetes requires constant attention and effort, including waking you up in the middle of the night begging for more glucose or insulin. "My disease requires a lot of attention—how I eat, how I feel, making sure that I always have emergency sugar just in case," explains Anne Tetenman, a mom of two who was diagnosed with type 1 diabetes in the early 1990s at just 26.
Instead of making assumptions about a disease that plagues nearly 10 percent of the U.S. population, read up on the realities of what it's like living with diabetes, according to those who have it and the doctors who treat it.
Many patients living with diabetes simply can't afford to keep up with rising costs of insulin. When researchers from Yale University studied a clinic in New Haven, Connecticut, in 2018, they found that approximately one-fourth of all diabetes patients treated there were cutting back on insulin because they couldn't afford adequate doses.
"The prices are terrible," says Tetenman. "My health insurance covers a lot of what I have, but when I see what the actual out-of-pocket cost is—even for things as necessary as insulin—it's just obscene."
Those insulin shots can leave scars.
If you keep giving yourself insulin shots in the same spot on your body, you will end up with lipohypertrophy, or a lump under the skin caused by an accumulation of fat. Unfortunately, these lumps leave visible scars, and often people living with diabetes don't know about the risks of giving themselves shots in the same spot until it's too late.
The blood sugar tests are arduous.
Having diabetes is not for the faint of heart. The majority of individuals with the disease monitor their blood sugar via finger-prick tests—and as you might imagine, sticking yourself with a needle isn't exactly something that's easy to do several times a day.
Type 1 and type 2 diabetes are very different.
"All types of diabetes are not equal," says Tetenman. "You hear about type 1 and type 2 and gestational and all these different things, and I almost wish that they had different names for all of them because they're really very different."
Though there are several factors that make the two diseases different, perhaps the biggest difference is that, while type 1 diabetes is an autoimmune disease that's typically inherited, type 2 diabetes is a metabolic disorder that's caused by things like obesity, genetics, and inactivity.
You can develop type 1 at any age.
"People used to tell me that I had late-onset juvenile diabetes because I was 26 when I was diagnosed, but you can be any age and get type 1 diabetes," says Tetenman. The American Diabetes Association confirms that type 1 diabetes "occurs at every age, in people of every race, and of every shape and size."
Your weight has nothing to do with how you manage type 1.
Because type 2 diabetes is so closely linked to obesity, people often wrongly assume that type 1 diabetes must also be linked to a person's weight—but that's not the case. For people with type 1 diabetes, no amount of weight loss or weight gain will have any effect on the severity of the disease.
"Sugar-free" means nothing as far as diabetes is concerned.
People who know little about diabetes tend to wrongly assume that the disease is directly associated with sugar and sugar only. However, anyone living with diabetes can tell you that it's not just pure sugar, but also carbohydrates that have a significant impact on blood sugar levels.
"When I was first diagnosed, people would say to me, 'Oh, I got you sugar-free cookies because you're diabetic and you can't have sugar,' but carbs are carbs," says Tetenman. "If I have a piece of sugar-free cake, it's gonna be almost the same thing as if I had a bagel or pasta or something like that—it doesn't matter."
Carbs are hiding in many unexpected places.
It's not just typical carb-heavy foods like bread and bagels that you have to watch out for when you have diabetes. One medium banana, for instance, has a staggering 27 grams of carbs and requires a hefty dose of insulin. And mango? Just one cup of the cut fruit has 28 grams of carbohydrates. But these aren't things that you think about too often until you're living with diabetes and you need to monitor your intakes.
Diabetics require a secret sugar stash.
When you're living with diabetes, carrying around an emergency stash of sugar is a necessity. Should you experience hypoglycemia, or low blood glucose, you'll need to follow the 15-15 rule and eat 15 grams of carbohydrates every 15 minutes until your blood glucose is at least 70 mg/dL, all of which requires an ample supply of carb-heavy foods.
People with type 1 diabetes can't go anywhere without their pump.
That little machine you see on a diabetic's hip is a wearable insulin pump, used to automatically administer insulin as needed, and people with type 1 diabetes can't go anywhere without it‚ or they'll risk going into diabetic ketoacidosis.
But not everyone with type 2 diabetes needs to take insulin.
Though everyone with type 1 diabetes requires supplemental insulin in order to survive, not every case of type 2 diabetes calls for this type of treatment. As Verywell Health points out, most people with type 2 diabetes will start off trying a healthy diet and exercise—though if this doesn't help, insulin therapy may be necessary down the line.
You can eat whatever you want.
If you're a foodie who has just been diagnosed with diabetes, don't fret: So long as you know how to manage your blood sugar levels, your eating habits don't have to change dramatically. "I can eat whatever I want as long as I manage the insulin appropriately," says Tetenman. "You just have to know which things require more insulin."
The symptoms aren't always obvious.
Though common symptoms of diabetes include frequent urination, uncomfortable feelings of thirst, and extreme fatigue, the American Diabetes Association reports that some people with diabetes have symptoms so subtle that those experiencing them don't register them as symptoms at all. (This is yet another reason not to skip that annual visit to the doctor!)
The disease can impact your emotions.
A 2016 study published in the Journal of Medicine and Life showed that people living with diabetes are significantly more prone to depression than those without the disease. And that may be because of the frustrations that come with the disease.
"It's totally okay to get frustrated and mad sometimes because of diabetes," wrote patient Amber Rueger in a blog post for Medtronic. "Have a good cry. Tell diabetes to go where the sun doesn't shine. We are human. Don't let people make you feel bad because you get upset over diabetes at times. When that sadness and frustration is the dominant theme in your diabetes care is when those feelings become unhealthy."
Exercising can increase blood sugar.
The food you eat isn't the only thing that impacts your blood sugar levels. And though exercise is good for the maintenance of diabetes, diabetics often find that their blood sugar is high at the end of a workout as the muscles need more glucose (and therefore, more insulin) after long bouts of activity.
And so can being stressed.
According to the Diabetes Teaching Center at the University of California, San Francisco, the hormones that your body releases when you're stressed cause the body to simultaneously release glucose and become less sensitive to insulin, making your blood sugar levels both high and harder to control during a period of anxiety.
Everyone experiences low blood sugar differently.
"Some people, like me, have to deal with what's called hypoglycemia unawareness, which means we don't always feel it when our blood sugar is low," Rachel Kerstetter, who lives with type 1 diabetes, told Prevention. "Others get the textbook symptoms—shaking, sweating, confusion, irritability—but not me. I won't feel symptoms of a low and won't even know I'm low if I didn't check my numbers. Often when I'm low, I know in my head what I need to do, but sometimes I have trouble making myself do it."
And for some, it makes it hard to think.
One of the symptoms of hypoglycemia is foggy thinking. Many diabetics report sudden dizziness and confusion, a combo that can prove dangerous, even deadly, in some circumstances.
You can still have kids, but you have to be careful while pregnant.
According to the CDC, diabetes only poses a risk during pregnancy if it's poorly managed or neglected. So long as you effectively manage your blood sugar during the pregnancy, you and your baby will be perfectly happy and healthy.
Taking your medicine every day is literally life or death.
"The hardest part, for me, is having to rely on medication to keep living," type 1 diabetes patient Karen Bryant told Prevention. "I remember standing at the pharmacy counter one day as I waited for my prescriptions and thinking that my very life depends on that pharmacist being able to give me the medications that I need. That was a very sobering thought."
Having diabetes makes you much more organized.
Between checking your blood sugar and keeping track of all your medications and supplies, living with diabetes forces you to become more organized. You're also far more in tune with your body, seeing as you have to think about what you're doing and eating and how it will affect your blood sugar at all times.
Sleeping through the night is no easy feat.
When you have diabetes, you have to maintain stable blood sugar levels all the time, the middle of the night included. Your blood sugar levels go all over the place when you sleep, so there will be nights when you're woken up suddenly by low lows or high highs that require immediate attention.
Spontaneous sleepovers or weekend getaways are out of the question.
Once you get a diabetes diagnosis, don't expect to take any more last-minute vacations (unless you happen to have two or three days' worth of insulin and blood sugar test strips on you). Sure, you might miss those spontaneous adventures, but being healthy at home beats a trip to the hospital in a far-off place any day.
Excessive drinking is a serious problem for diabetics.
The problem isn't that diabetics can't digest alcohol. Rather, the problem lies in the fact that, should you get drunk, you run the risk of forgetting to monitor your blood sugar levels and could end up in the hospital with complications. And for many diabetics, alcohol can influence blood sugar levels, meaning you're playing a dangerous game if you happen to over-imbibe.
It can cause a myriad of other complications.
According to the American Diabetes Association, having diabetes increases your risk for skin disorders, eye problems, nerve damage, kidney disease, high blood pressure, and more.
It can't be cured.
"You'll always have people who will say to you, 'Oh, I know someone that cured their diabetes with extra cinnamon in their diet,' or 'They had this in their diet,'" says Tetenman. "There's nothing that can change [my diagnosis] at all until they come up with a cure for autoimmune diseases."
It's perfectly possible to live a normal life with diabetes.
Though Tetenman has lived with type 1 diabetes for the majority of her life, she says that her diagnosis has only ever stopped her once from doing something she set her heart on.
"I thought initially that I wouldn't be able to do certain things because of this 'disability' and the only thing I can think of where I've ever been told that I can't do something is scuba diving, because I might not be able to tell if my blood sugar drops," she said. Ultimately, Tetenman said she doesn't feel held back by her diabetes. "I could do a pie eating contest if I wanted to," she added.