7 Things You Don't Know About Diabetes Unless You Live With It

Patient Expert
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It’s easy to think you know a lot about diabetes thanks to today’s media…but I’m sorry to say, they often get it all wrong. Wrong, wrong, wrong. If living with diabetes was like what the media portrayed, we’d all be practically cured if we just had an insulin pump, ate oatmeal and chicken regularly, treated our low blood sugars with more insulin, and avoided ice cream and doughnuts. Oh, but for those with type 2 diabetes, all they need to do is lose weight (‘cause that’s so easy for everybody, right?) and eat more salad.

Wrong. Here are 7 truths about diabetes you would never know unless you live with it.

1. We are thinking about our blood sugar all day long.

Contrary to mainstream media’s idea of diabetes, we have to think about managing our blood sugar all day long! Weddings, birthday parties, while breastfeeding, walking during a lunchbreak, presenting an advertising campaign to Nike — you name the time of day and I can guarantee we’re still thinking about our blood sugar! Even if it’s been 4 hours since I last ate, I could still experience a high or low blood sugar. The human body requires insulin 24/7 to function properly and survive. While an insulin pump may seem like a cool piece of technology (and it is), it doesn’t make life with diabetes any easier, it just changes how we manage it. For those taking insulin via syringes or insulin pens, we also need insulin with every meal but we might need insulin between meals, too. Your blood sugar is constantly fluctuating and we are constantly trying to compensate for our body’s inability to manage it properly.

2. It’s every night, too.

Diabetes doesn’t take a break overnight. Waking up at 2 a.m. to prick our fingers and treat highs or lows is hopefully not a daily requirement, but for many it can be. Children with diabetes, for example, usually need their parents to wake up once, twice or three times a night to ensure they are sleeping safely. If I eat a treat of buttercream-frosted cupcakes and take insulin before bed for the carbs, I’m likely going to need to wake-up in the middle of the night to be sure my guestimate for that carb-count was accurate. Every single hour of every day, even when we’re sleeping, our blood sugar can be fluctuating based on the zillion factors that impact blood sugar levels.

3. Even oatmeal, brown rice and grapes have a huge impact on my blood sugar!

Mainstream media has led the general population to think that Skittles, ice cream, and doughnuts are the cause of high blood sugar, but I’ve got some startling news for you: people with diabetes know that starch-laden foods like brown rice, Raisin Bran cereal, and grapes easily and quickly spike blood sugar levels. All types of carbohydrates will raise your blood sugar and all types of carbs require plenty of insulin to convert the resulting glucose to energy. Sure, a diet consisting of more healthy, wholesome carb sources will have a beneficial impact on our health and insulin resistance levels, but don’t be shocked when you see a person with diabetes avoiding a bowl of your wholesome grandma’s homemade oat bread. Personally, I’d rather save my carbs and insulin injections for chocolate!

4. Yup, it still hurts every time I prick my finger or take an injection.

Guess what? I believe you when you say you “hate taking shots”...but I hate them, too. The reason I don’t cry about it is because I have to do it every day to keep myself alive. We don’t “get used to the pain” in a way that makes it hurt less, we’re just used to experiencing that pain. In fact, the longer we live with diabetes the more scar tissue we have from those daily injections and finger pricks, which means it hurts more not less. There are nights when taking my long-acting insulin dose stings so bad I have to cuss and grimace to get through it. But I don’t have a choice! It keeps me alive.

5. Exercising is one the most complicated, challenging things in the world!

Exercising, especially for people with diabetes who take insulin, is extremely complicated, and no matter how well you plan and prepare your blood sugar for aerobic or anaerobic exercise, things can still go wrong. I can never just suddenly decide to get up and go for a walk. I need to factor in when the last injection of insulin was, what my blood sugar is now, what type of exercise I’m going to be doing, and how long I’m going to be doing it for. All those factors determine if I need more insulin, less insulin, more carbs, fewer carbs, yada, yada, yada! Exercising at the same time of day is important for those of us taking insulin because it allows us to control as many variables as possible to prevent unwanted dips or spikes in our blood sugar during that exercise.

6. Insulin doesn’t just “fix everything,” and knowing how much to take every time I eat is complicated.

Speaking of complicated, taking insulin as a person with type 1 or type 2 diabetes is not an “easy way out” or “a quick fix.” Taking insulin via injection or a pump is insanely complex, confusing, and sometimes very scary, too. Just one unit of too much insulin with my lunch can leave me sweating on the playground when I’m trying to chase my kids around. Just one unit too little insulin for the apple that was somewhere between “medium” and “large” sized can mean my blood sugar is 250 mg/dL two hours later. Insulin is not a quick or easy fix for anything. It’s incredibly high-maintenance and requires non-stop, 24/7 management.

7. We are constantly defending ourselves.

While someone would never publicly scold a person with cervical cancer for having contracted HPV when she was a teenager, society seems to see diabetes (and more so with type 2) as something they are experts on and worthy of voicing their opinions about. In fact, diabetes is just as personal, just as complicated, and just as difficult to live with. Even in a doctor’s office, I find myself constantly answering questions I’m being asked just so the doctor can determine if I’m the “typical” diabetes patient who neglects themselves or one who takes care of themselves — but the assumption seems to always be that none of us take very good care of ourselves. We are constantly defending ourselves, who we are as people, our integrity, our decisions, our lunches, our ability to understand our very own disease, and our daily ability to manage it. Very rarely are we given credit for waking up every day and facing the non-stop, 24/7 challenges of diabetes every single day of our lives.

If you know someone who lives with any type of diabetes, the most helpful thing in the world you could simply say to them is: “Hey, I don’t know a lot about your disease, but I know it isn’t easy. Good for you for waking up to another day of dealing with it! I admire you!”