A question for the Diabetes (Type 1) Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

I remember being in the hospital. In those days, you had to go to the hospital when you were diagnosed with diabetes. I was in there for a week. I didn’t feel sick at all and so they had a hard time finding things for me to do. I had to go to basket weaving classes, group therapy, craft classes in the hospital, just to keep myself interested. They did not know what to tell me about the future, except to say that I was never going to be rid of this disease. It was always going to be with me and I’ve assumed that’s how it’s going to be. I don’t really believe there’s going to be any monumental cures on the horizon. I don’t think they’re going to get there. I don’t think they want to and I don’t think they’re going to. So if I was back then, I would just say, just live your life. Do what you want to do. Don’t worry about it and of course in those days, the tools were not so good but I would say, Hey, things will get better. They will invent some new tools that will be more helpful to you in the future and you just need to keep going and not feel any different than really anyone else.

I would advise them to keep up with research and developments that are available or in progress. You have a doctor who is willing to work with you and respect your thoughts and opinions. I would tell them to keep working at it, do your best and always be hopeful for what the future holds.

I would tell 16 year old me that diabetes is something that takes a lot of time and effort and energy, but you need to put in all that work because if you don’t, there’re longterm implications down the road that you may not see when you’re 16, 17, 18 years old. But as you get into your 30s and 40s, you might lose your kidneys, you might lose your eyes. And really, baby steps now will stop longterm damage dramatically down the road. Other than that, I would say, just run for the par for the course, do the best you can and suck it up. But be willing to forgive yourself when you make a mistake. Diabetes is not a perfect condition. There is no perfect solutions. So do your best, and don’t be too hard on yourself.

Make sure to find a support group that you can talk to about the things that you’re about to say. Make sure to do the research that you need to do. Sleep every chance you possibly can. Know that it’s not the end of the world and life does go on. And yes, this is just a speed bump.

The advice that I would tell myself would be to just be real careful about the amount of medicine that you’re given, especially, when you start to feel your blood sugar going low, especially make sure that you got something there to take to make sure it doesn’t get too low. I’ve been dealing with this for a couple of years now and it’s better now than it was at the beginning. In the beginning, it was a lot more scary but it’s not too bad now. Just try to keep managing each and every day.

I was diagnosed when I was six years old so I would tell my younger self that I’m going to be in for a bumpy ride but this will make me stronger and unafraid to address anyone regarding anything that’s incorrect and it’ll also make you an advocate for people with diabetes and disabilities.

I think I would share with them that diabetes isn’t an old person disease and it also won’t alter your life so drastically or affect your health so drastically that you need to be as worried as you were when you were first diagnosed. I would tell myself it’s a lot more manageable than you would have first worried about it being.

I would tell myself definitely to find a better doctor. I had the worst endocrinologist, plural, for a couple years. I finally found one who is amazing, who listened to me. And I would tell myself, Find a better doctor and start taking care of yourself right away, because really starting to try to take care of yourself five years down the road, when you’re finishing a graduate school program is very difficult. Establish it, and then just keep holding on hope that there’s going to be better technology, tools, treatments, things like that. How would I describe to that person how you feel now? I think I would tell them I’m stressed, because I didn’t take care of myself back then. And it’s not 100% my fault. I had very bad information from doctors, I didn’t know anything. I knew nothing about diabetes. So start researching and figure it out.

It’s kind of tough because when I found out, it was before I fully got the diagnosis. I kind of already knew it was coming and that was probably the most upsetting time, when I knew I had GAD antibodies ahead of actually getting diagnosed. And then, I ended up getting diagnosed maybe six months later. And I think that there’s not much — what would I say? Like, “Hey, enjoy this time before you have to take insulin. Eat more bread and drink more alcohol, because guess what? You’re not going to be able to drink more than two drinks of alcohol without being worried that you’re going to go low.” I don’t know that I’d change my health habits at the time. In fact, I’d probably would have been even worse because of the fact that now I’m so restricted. Yeah. I just miss being able to grab a loaf of French bread and eat the whole thing. And I think the person before I was diagnosed, didn’t realize what they were missing with that, so. I mean, I was already healthy. I already knew about carb counting. I already knew all of that and I don’t know that I would tell myself any different at that point.

Eat less pasta, eat less starches, cut down on your carbs, exercise more, more nutritional and balanced meals.

This is a great question. My daughter was age six when she was diagnosed, and she’s 17 now. She spent more life being a type 1 diabetic than she had being a non-diabetic. When she was six, we were diagnosed in the hospital. I remember it was just after midnight. We had gone in, and I remember being devastated by it. We were in the hospital for three or four days in the pediatric floor, and I didn’t know a single soul who was diabetic who needed insulin to live. I was devastated by it. I had information flowing at me from every which way, and I thought, “Will it ever get any better?” I wish I would have known or had someone to reach out to and say that, It will get better. You’ll learn to live with it. She’ll be fine. You’ll stay on top of it. You have great resources and great medical team, that, She will go on to live a great life, and it will all be okay, and you don’t need to learn everything in one day, that, It will be a process of learning,” that, She’s going to live to be a grandmother in this life and don’t let it affect you that way,” that, You’ll learn all she needs to know.

When I first found out, I wasn’t quite sure what diabetes was. It wasn’t really made clear to me so I had to do my own research on YouTube and online. I would say avoid high carb, high sugar foods. You need to be cognizant if it’s above five to 10 carbs or four grams of sugar, you need to be aware and avoid those foods. I also would tell myself that I know it may seem unfair given your dedication to a healthy lifestyle. Even before diabetes, I was very vigilant about what I ate so it just was kind of a burden to find out after you see other people eat such a bad lifestyle and they don’t get diabetes, but you’ve been dedicated to a healthy lifestyle your whole life. It was just kind of disheartening to see, but there are challenges in life and could always be worse so stay strong and vigilant and you’ll overcome obstacles in life.

I would just provide support and some guidance to that person, and let them know that while it is a life-changing diagnosis, it’s not the end of the world, it’s going to be okay. It just requires some daily attention and maintenance and good perspective. Yeah.

I, actually, I think about this a lot. It’s only five years ago, I was 20, just becoming an adult. If I could go back to that day, I would tell myself it’s okay to ask for help. I struggled with depression in the beginning of my diagnosis and I didn’t know it, and I didn’t know how to ask for help. And I struggled a lot with letting people in, so if I could go back, I would just tell myself it’s okay to not be okay and there are resources and people out there. That will make it better and don’t be afraid of it. I think that, that would have made a big difference for me.

I feel like now I have my condition under the best control that I ever have. And if I could go back to my younger self when I was first diagnosed, I would tell my younger self to really take it seriously and to try to get it in control as much as I can earlier on, because for a long time I was semi keeping it under control, but definitely not doing everything that I could. And my A1C was higher than it really should have been. And it’s taken a lot of work to get to where I am today and to get the control that I have today. It would have been a lot easier if I had taken this more seriously and worked harder right from the beginning.

My advice would be to tell myself it’s okay. Things will get better, and just take care of yourself a little bit better instead of putting yourself last on the list. And you will survive longer than what the doctors told you you would live, because of the great inventions that have been happening.

I would advise them to read modern writings on Type 1 diabetes. Diatribe.org has been a lifesaver, literally.