A question for the Diabetes (Type 1) Community

Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?

Answers from the Community

I’ve had Type 1 diabetes for now 50 years. Of course, it’s impacted my life for most of my life, but it’s something that I don’t really dwell on. I’ve tried not to let it get in the way of things that I want to do or need to do. Now I’m 60, so when I was younger, it was more related to what I wanted to do in college. I was in ballet and they told me I was too weak to be able to proceed through that program. I actually had hurt my leg and they said, “Because of diabetes and my leg, I couldn’t keep going.” So I needed to pick another major that wouldn’t … They wouldn’t send me home. They actually tried to get people to leave the program if they were having things like that going on. So that was something back then. At this time in my life, I’m pretty much used to being a diabetic and not really dwelling on it. We have new tools that help, and that helps you deal with challenges that you need to get passed in everyday life. There’s a lot more available than there was years ago, so.

It is sometimes frustrating when my blood sugar drops unexpectedly, which always seems to be at the worst time possible. I have been using a continuous glucose monitor, which has helped with this frustration and cut down the number of times it’s happened.

So I think having diabetes, obviously, has a very dramatic impact on my day to day life. From the food I eat, to the medicine I take, to the amount of times I have to check my blood sugar, to being careful about what I exercise and how it might impact my sugars. There’s so much. There’s no time off from diabetes. And I think that’s the most frustrating thing. It’s an always on condition. To do this, I’ve adjusted my treatments, I use an insulin pump and a continuous glucose monitor that really takes some of the control burden off me. But unfortunately, there’s still a lot left to do.

Every aspect of our life is affected by that, everything that she had to eat as a family, everything that he eats as a child, sleep patterns. Can the parent … Yeah, be available. Can the parents take something to sleep deep at night, or do I have to be at the ready? Can they work close by to the house if need be? Do they have the ability to take time off for illness or for doctor appointments? Do you have the finances to afford all of the doctors and all of the supplies? And so on and so on.

So for me on my day to day health issues, having to just check my blood, making sure that everything’s good, take my medicine when I need to. It’s just more stuff to do, so it’s harder to do each and every day than before.

I’ve been diagnosed with Type I diabetes and a big frustration with it is not being able to sleep through the night often because of either low blood sugars or high blood sugar. Makes it really interesting when you have to get up and work. Another thing that’s frustrating is having to address low blood sugars when at work. When these happen, I usually have to step away from my desk for anywhere from 15 to 45 minutes while I raise my blood sugar. And usually I stay in the office area where everyone else is so someone can babysit me and make sure I don’t lose consciousness. To mitigate this I do have a service dog who will alert on quick dropping or approaching low blood sugars, and I wear an insulin pump that has the ability to cut it off when it detects that I will be going low within a half hour.

Hi there. My health challenges affects my family in the aspect that we have to choose certain things to eat. We try to eat in a healthy manner and watch the sugar, both for my sake and for my daughter’s sake as well, to prevent her from developing diabetes. Also too, I have spaces where I have low blood sugar, and so I have to be very careful with that as well.

The frustrations and challenges experience is a lot with blood sugar levels. If it goes up or down, mostly with lows, if it goes down at an inopportune time when you’re trying to exercise or work or things like that. Another challenge and frustration is just trying to handle insurance and billing and paying the bills, which is always challenging. What I’ve done to adjust to these challenges for billing and stuff like that, I’ve just kept really detailed notes. I’ve learned how to check and review EOBs online, talk to billing people and dispute charges, just to try and make sure everyone’s on the same page. For the blood sugar issue, I think it’s more of just trying to adjust and accept it and just make sure I’m prepared kind of at all times for whatever might happen.

I think the way it impacts me the most is low blood sugar events can cause me to be a little bit less productive at work while I’m trying to get my blood sugar back up, and I might not feel well. Similarly, I’m a runner and sometimes I like doing backpacking or hiking and a lot of different physical activity, and while I have an Omnipod, which helps deliver insulin and I also have a Dexcom to monitor blood sugar, they don’t always work perfectly. For example, I was on a backpacking trip and my Dexcom, or sorry, it was my Omnipod just errored out and died. And so I had a backup and it lasted a day and then it errored out and died. Yeah. And then I had to basically use the insulin, what’s it called? The pen that I had with me, which might have been expired, but it seemed to work okay. But then in the middle of the night while I was camping also, for whatever reason, I went low and I was 46 in the middle of nowhere while we were here camping. And it was terrifying, and I had these Goos in the tent with me that I ate. I ate both Goos and I was still low, and my husband had to go out and get our bear canister with more food in the middle of the night in case I went low further. And you’re sitting there and you’re like, “Well, you’re not supposed to have food in your tent because you could get attacked by a bear.” But at the same time with diabetes, I have to have some sort of food nearby and I didn’t have enough. So it’s stuff like that that most people don’t have to think about, I have to think about and deal with. And sometimes it’s scary when you’re low and it is extremely frustrating. And I just want to focus on other things in life, and sometimes diabetes just adds a little bit more hardship to my day to day. So, long answer.

Frustrations that we have to deal with is to be able to take our insulin when we’re out in public, without people thinking we’re junkies. And how we deal with it is we ended up going into the bathrooms. We have to be careful what we eat. We have to change our eating habits. Frustrations are easy to deal with. You just ignore what people say and just do what you need to do. This is the second time I’m answering this question, number one. So I really don’t know what you’re asking for. You’re asked for frustrations. Frustrations is just having to take a shot every day. And if you’re out, a safe place to take it where people don’t think you’re shooting up. And how to deal with the situation is just to deal with it. You just watch what you eat. You exercise better. You talk to other people that are diabetics to make things a little easier.

My daughter has Type 1 diabetes. She was diagnosed at age six, she’s 17 now. How it impacts our day-to-day life is that she wears an insulin pump and a continuous glucose monitor. And we have to pay attention to those devices, where her blood sugar’s headed, low or high, and adjust accordingly, all throughout the day, 24x7, 365. What frustrations and challenges do I experience? Again, the highs and lows of blood sugar, that everyday activity can adjust your blood sugar, what food she eats, where she’s going. Being a typical teen is a challenge with Type 1 diabetes. And what have we done? We’ve tried to make it as normal as possible, really. We’ve tried to educate ourselves. We’ve tried to keep up with our doctor appointments every three months, pay attention to the technology and latest innovations that can help make life easier for her.

Some frustrations I have and how it affects my everyday life is I can’t eat things that I used to. I eat low-carb, or keto or high-protein, low-carb. It’s hard to go out to eat and have a good time sometimes because people often make comments and rude remarks when I opt to make healthier food choices at dinner. If I choose to eat broccoli instead of fries given the fact that I have diabetes, people often make jokes of why you’re making those decisions, or when you have to make alterations to the menu it always seems to inconvenience people in the restaurant industry, so it’s just hard to do that. You shouldn’t really worry about what people think, but it does get annoying and you don’t want to inconvenience people.

My condition has affected my day-to-day life in a lot of different ways. One of the ways, for example, is just when I have low blood sugar or high blood sugar and I’m working in the middle of a workday, and it interrupts whatever it is you’re doing, even if it’s time-sensitive because it’s a health condition and serious where you have to address it immediately and you can’t wait 5, 10, 15 minutes, and then come back to it.

So I am personally the one with the condition. I wouldn’t say there’s too many day-to-day frustrations, it’s a little bit more longterm with being Type 1 Diabetes. But the main ones that I see, frustrations, would be dietary. The burden of always having to have food and then putting that on a financial thing, I can’t go out and just buy the cheap bag of pasta and eat that and kind of be okay. So I would say it would be more diet and food and just constantly having to feel like, “Oh, it’s having to have resources at a healthy level.” And that then brings on a financial frustration in itself, I would much rather like to save my money and put it towards different areas and be more frugal, but I just feel that burden and frustration of always having to be healthy and buying the right things for my body, and not taking the cheaper route. Kind of how I’ve adjusted to this is, looking at budgeting, meal planning, meal prepping, just making sure that everybody is okay with the type of meals that I eat in my household and saying, “If I don’t want to eat a high carb meal, I can just eat something else, it’s okay. And it’s okay to say no to something and not eat it.

Having Type 1 diabetes is a daily struggle because you have to think about it constantly. Any time you put anything in your mouth to eat, you have to think about it. And sometimes, your blood sugar goes high or it goes low without any explanation. And it’s very frustrating to try to figure out what happened and why, and to correct it. Sometimes, you have to troubleshoot multiple times to figure out, for example, why your blood sugar keeps going high when you haven’t eaten much. Did I overdose? Did I give myself too much? Do I have a kink in the line? Do I have to replace my reservoir or my infusion site? So there’s lots of things. There’s also a lot of troubleshooting and constantly having to think about it when you’re constantly getting alarms and alerts about high or low blood sugar, rapidly rising or rapidly decreasing blood sugars.

Day to day, never one day is the same. I no longer can work and it’s hard just doing daily chores. That’s pretty much the challenge, is that they’re not the same. We’re trying to do what we can, and I’m alive.

We’ve had to adjust my exercise schedule, when we eat, everything has to be more on time.