At Connected in Motion‘s Summer Slipstream 2017, we sat down with some of our participants to share the real world struggles and hopes for the future of those living every day with Type 1 diabetes. As part of World Diabetes Day, we hope this series will inspire other T1D’s to see each day as a new challenge, and to educate others on the daily struggles of living with Type 1 diabetes.

“I suffer some pretty serious anxiety about going low in public. When I’m low in public, it’s a nightmare. I’m afraid of passing out. Nobody is going to know what to do. A big scene is going to be caused. I’m going to be the centre of attention… seizing in the middle of the grocery store… it gives me massive anxiety. I’ve left full shopping carts in the grocery store and just walked out to my car before.”

“Being low, I keep that pretty secret. I don’t want to burden anybody with my diabetes. I feel I should be self-sufficient and I don’t want to depend on other people.”

“My biggest fear with diabetes is the financial cost and not being a burden on my family. If I want to be using certain technology, then it’s going to cost not only me, but other people close to me. The responsibility of carrying that cost and other people in my family helping to carry that cost as well.”

“The biggest misconception is that it’s OK to ask exceedingly personal medical questions and make judgments on those answers. More than anything, I get ‘What is your blood sugar right now?’ which I think is far too personal. They’ll start asking questions about diabetes, but will jump into ‘What’s your sugar right now?’ and its something I’m really working on, thinking of a comical and productive answer that lets them know its not OK to ask that, without getting myself into a very negative and frustrated headspace.”

“Does the thought of your own children getting Type 1 scare you?”

“It does. I think that when you’re the parent with Type 1, if one of your children did develop Type 1, there’s a sense of responsibility and a sense of guilt that goes along with that as being the root cause that resulted in the diagnosis. I think that a lot of people say ‘well, who better to help your child than you?’ and sharing your life experience, but I don’t think that this is an experience that I want to share with my child. With that in mind, I think that some of the fear of your child’s diagnosis is about my own perception of that and my own processing of that selfishly.”

“What was it like for you raising a daughter with Type 1?”

“Not wanted, not desired, but there’s two of us raising her. It would have been easier, my wife and I have said many times if she or I had been diagnosed, but not one of the children. You don’t want to be a helicopter parent, but you end up being a helicopter parent. As a parent, your job is to launch your child. Not to run their life. It’s like a boat. At some point, you have to launch them and stand on the dock and wave. That’s any parent. This is just a little bit bigger and more challenging.”

“What’s the hardest part of working in the medical industry and having a condition like Type 1?”

“I had graduated university and became a Certified Diabetes Educator. I worked with one of the pump companies in diabetes care, and I found it to be overwhelming supporting everyone else. By the time it came to my own diabetes management, I was really letting it go. So, I made a switch to go into the hospital and what I find now is that my diabetes allows me to be more empathetic with my patients, because I understand their struggle. Especially with the parents, knowing that this is your child and even though we’re telling you it’s OK, they may be stressed. They may not always be the most polite, but its because they’re worried about their child, so I think that it gives me both the patient perspective and the health care provider role.”

“My close friends have been so understanding. They take the effort to really learn about it and ask questions. I think at first, I wasn’t as open to sharing that with them and when I realized they were really interested in learning, that’s how I ended up sharing more. Some days are tough, so their support is key. I feel very lucky.”

“I’m hoping to run a 5K, a 10K and a full marathon in 24 hours. I haven’t done it yet, but that’s my plan.”

“How are you going to prepare to manage your diabetes through that?”

“Trial and error at the start. Reducing the basals, have some carbs, and feel it out from there. See how far I can go, how many tweaks I need to make to my basal rates, how long do I need to extend my temporary basals afterward. I’ve had the most troubles with lows up to 24 hours after training sessions for previous races, so that’s the most difficult part for me.”

“Diabetes has actually taught me a lot about how my body works that otherwise I would have never ventured into understanding. Not that I have it all figured out, because I feel like it changes on a daily basis, but I think it has really taught me how to be healthy and balanced as far as health, exercise, eating habits and things like that. I think I have a pretty balanced lifestyle.”

“I don’t know if it’s because I’m turning 40 or not, but I’ve never had to work so hard at it as I have in the last year and a half. I don’t know why, but that’s the best way I can describe it. I’ve just had to work harder and been more frustrated. Prior to this, it was always something to think about, but it was never really hard work for me. So, I think now with technology, you can be bombarded with it all day long if you choose to be. You see what happens with lows. Last year, a friend passed away… I worked with him at summer camp. That is the first time someone I knew really well died with diabetes. That screwed me up for a good month probably. Just talking with that group of friends, I think it really shook a lot of us. We’d never really heard of it before and didn’t really understand it. Then of course, there’s the internet which is not your friend in those times, but that’s when I was very thankful for having a Dexcom and a CGM and the ability to share it. Now, if my husband is away traveling, I turn on alerts for my mom, so I sort of always know there’s a backup. It’s a night time sleeping thing. I had no experience with that, it was never really a fear or a worry, but after that happened it rattled my cage a bit.”

“I teach family studies, so I actually use my T1D to my advantage. I teach them about diabetes and the difference between Type 1 and Type 2. From Day 1, they know I have diabetes, they know what to look for if I have a low blood sugar. In the past, I’ve let students give me injections, just to be the guinea pig, and teach them not to be afraid of it. We have more and more diabetics now, so they’re seeing pumps around the school and they’re understanding of it. We have about 1600 kids at our school and 10 of them have T1D. It’s becoming more accepted in the school. Maybe it’s because I’m vocal about it with the students and the staff, but people have a better understanding of T1D these days. Our school is doing glucagon training for some staff, which is pretty cool because that’s a new thing.”

“I have two sons. Neither of them have type one diabetes. I do think about it though. They are two and six. I was diagnosed when I was ten, so I know it’s still a possibility, but I’ve kind of wrapped my head around it that I could be okay with that. If they get sick or have a fever, I test their blood in the night time while they’re sleeping. It’s the first thing you think of. It’s in the back of your head a lot and it has affected my life in a very large way. It’s definitely changed who I am, mostly for the better, but it’s the struggles that made you that way. It’s not something you want, but silver linings are everywhere if you look for them.”

“What do you think has been the biggest change since you were diagnosed 17 years ago?”

Definitely the insulin pump. Going from shots with the old fashion needles to the insulin pump was definitely the biggest change I saw. The Dexcom too. Both things improved my control immensely. Before, my A1C was around 13-14, now its closer to 6 or 7. So much better.

“I love going places. Even getting away on vacation, diabetes is still on your mind. I can’t just pickup and go, I have to pack like a boy scout. You don’t know what’s going to happen. Even going for three days, I can pack my infusion sites, and I might need two for those days. However, I know from prior experience that I’ve gone through 3 or 4 in a single day. So, if I’m going for 3 days, I might need 10. In reality, it could last me two weeks, or it could last me two days. Then you need to have a backup plan, so you’ve got your bag of syringes, you just don’t know. It’s crazy, but I love going places and I like to just disconnect.”

“The first marathon I ever ran, I basically thought “I’ve been running my whole life, let’s just do this.” It wasn’t until I was training for a marathon, where I’d never worn my pump and wasn’t getting insulin, where about Mile 18, I felt like crap. My blood sugar was good, but I had ketones, and I’d never had them. I realized I needed to start wearing my pump when I run and needing to have insulin as I’m exercising. I think for me, the value of technology has come to be the biggest thing. I have my phone with my Dexcom numbers and my OmniPod, and I wear a vest so I have everything easily accessible. Goo’s here, waters there, so you have to plan. As a person with diabetes, you’ve always been a planner, so it’s a planning process.”

“I thought I had food poisoning. That was pretty damn close to a near-death experience. I was skiing across the Penny Ice Cap and things went south. Five of my classmates and Nordic ski team members from Queen’s, we went up and helped Parks Canada with an assessment of Spring skiing conditions (at least that’s what we called it) in Auyuittuq National Park. So we went up in April and the game plan was to spend 30 days. There were just so many challenges there. Wind and snow. We planned on two days to get up to the top of the Pengerton Pass, but it took five days. We didn’t know about the wind. There wasn’t any internet to look these things up in 1979. So the cold air spills down off the Ice Cap and goes into these glaciated U-shaped valleys and then rips out to the ocean at anywhere from 100 km/h to… well, it went off the gauge that we had. It was over 120 km/h. So you’ve got pea-sized gravel going into your face. So, I got sick on the trip, which I found out last year was likely ketones from a very high-intensity exercise. I thought it was food poisoning. I was throwing up and I couldn’t keep anything in, and because of that, I didn’t take my insulin. I tried to eat because my experiment was, “Can I keep some food in, before I take my insulin?” The answer was no so that lead to an Inuit and an RCMP officer managing to get a snow machine and a wooden sled up to the top of the Owl River Valley and they dragged me down and out to Qikiqtarjuaq. Then it was out across the pack ice, 40 kilometres, to the nursing station there and a Twin Otter flight to Iqaluit. Wasn’t quite the trip I was hoping for, but I survived it and lessons learned. The six of us who were on the trip still managed to get together every few years and do a bit of skiing.”

“Is there anything about diabetes that scares you?”

“All of it. The unknown. How long am I going to live with it? What complications are going to happen? I’m taking care of myself now but what happens in ten years, twenty years, forty years, fifty years? I plan on living to 100. We’ll see how that goes. Gotta have goals anyways, so what’s going to happen in 64 more years? We’ll see!”

“A lot of times when I bring up diabetes, everybody assumes I have Type 2, which I understand. If I saw me on the street or heard something, I would think that. So, I’m not as open about it because of that, because honestly, I feel like I’m not a good spokesperson for Type 1 because that’s not what people see when they look at me. I try and just talk to people and educate them. There was a woman that I worked with who was just diagnosed as an adult, and when I found out, I talked to her and tried to set her on the right path, and after we talked she went right out and got a pump, then got an OmniPod, then a Dexcom, and that feels really good to try and set somebody on the right path. She’s happy and she’s excited and doing much better.”

“What’s the biggest misconception you see from other people about T1D?”

“That it is something you got because of poor diet, lack of exercise, or a generally unhealthy lifestyle. Or that because you experience a low blood sugar or high blood sugar around others you are labelled a “bad diabetic”, without them knowing that the constant fluctuations of blood sugars in diabetics are normal, and occur on a daily/hourly basis, which does not mean that you are unable to control your diabetes.”

“I remember when I was first diagnosed almost 40 years ago, my doctor and nurses told me to find a low-stress career. I did the exact opposite, leading adventures from the Arctic to the jungle, and then becoming a teacher. I have not let my diabetes stop me from doing anything I’ve ever dreamed up or wanted to do! I have been dealing with diabetes by myself for a long time, and it has been so inspiring meeting people who are in the same situation and spending some outdoor active time with like minded people. It’s great to know I am not alone dealing with this!”

“I was 34 years old when I was diagnosed and I felt like I was being buried with an avalanche of information. In the midst of learning everything, I completely underestimated the emotional toll that the T1D diagnosis was having on me. With the diagnosis, I suddenly found myself in the position of feeling like I didn’t fit or belong anymore because I was different.

I had a great health care team working with me but I felt like I really needed to talk with other adults living with T1D; I felt that having the opportunity to talk with others who “got it” would help me with the emotional chaos I was feeling. It absolutely did! My biggest piece of advice for someone who is newly diagnosed is to find a T1D community and reach out to them. Look for a group to meet with in person in your community and/or join an online community (there are many!). I wanted to meet people living with T1D in my community and there was no group, so I created one. We meet monthly to catch up or hear from a guest speaker and the opportunity to share with and learn from each other has been invaluable in helping me live well with T1D. I also highly recommend getting involved with Connected in Motion; it’s a great way to challenge yourself with activities that might be outside of your comfort zone and meet amazing people living with T1D.”

“My biggest accomplishment so far? That I’m still here! In all seriousness, I have a successful career and have not let T1D hold me down in that respect. I go on work trips for months at a time and am able to work on some of the biggest TV shows in Canada with Type One not preventing me from doing so.”

“When I connect the dots of my life backward, I realize so many of the wonderful parts would not have happened, had I not been diagnosed with diabetes. So I stay grateful for everything life brings. I’m very lucky, and would not be as grateful if not for T1D.”

“If I could sit down one on one with someone important and teach them about diabetes, I would talk to the Canadian Revenue Minister Diane Lebouthillier and let her know the effect her decision is having on us. She seems to think that we don’t require 14hrs/week of life sustaining therapy. The question is not whether someone with T1D requires 14 hours of care/week or any other nominal number, the fact of the matter is that without constant intervention/care people with T1 will die, if not receiving care means the patient will die I think it’s fair to say, that care is life sustaining.”

“Is there anything about diabetes that scares you?”

“If my financial position changed, I wouldn’t be able to maintain my care.”

“To anyone recently diagnosed with T1D, I want them to know that it will be okay. At first, it’s terrifying and it’s okay to feel that way. I had such a difficult time when I was first diagnosed because getting access to the information and resources I needed felt like an uphill struggle all the way. I was angry, scared, frustrated, upset, and confused. But I got the hang of it, and you will too. The key is to accept that T1D is a part of your life and work with it as much as you can. When I was diagnosed, I can remember telling the nurse (after breaking down, which will happen a few times) that if I had to be diabetic, I was going to be the best diabetic I could possibly be. That attitude was invaluable because instead of struggling against diabetes and wasting energy wishing it away, I could spend my energy investing in learning about it and managing it. Everyone has their own journey and it is a struggle, some days will be better than others, but you’re not alone and you will be alright. “

“I’d like non-diabetics to know that I sometimes get tired of all this. Call it burnout or depression, but it helps to have friends that are also diabetic. It’s the understanding that helps.”

“Part of me is genuinely curious to know what kind of person I would be, had I not been diagnosed with Type 1 diabetes.”

“Having Type 1 diabetes has actually opened many more doors than it has closed. I can confidently say that I would not be the person I am today had it not been for my diagnosis. I have met so many wonderful, supportive people and have done so many great things despite the disease. It doesn’t stop me from what I want.”

“What has been your greatest accomplishment while living with T1D?”

“Doing everything that I wanted to do before diagnosis! I started Jiujitsu and have rocked some grappling tournaments, ran a Tough Mudder, and a half marathon few weeks ago. I really didn’t think I would be able to do combat sports after DX, and it’s taken a LOT of trial and error, but I’ve learned how to manage my diabetes and keep my gadgets on while throwing people, which is definitely an accomplishment!”

“I have two daughters. Obviously, I worry about them being diagnosed. I try my best to not be neurotic about it and I think I’m doing a good job. There is a blood test you can get to see if you are genetically more likely to get diabetes. I haven’t gotten the girls tested. I think if there was a good chance they were going to be type 1, I would be super neurotic! I worry that I would be an insane helicopter parent if either of my girls was diagnosed. I commend my parents for the amazing job they did with my independence but they didn’t have all the technology we have today. I think the best thing a parent can do is to make sure their child has access to other children with type 1. The best way to do this? Send them to camp for type 1 diabetics! The connections I made during my years at camp are still intact today!”

“What advice to do you have for someone who was just diagnosed with T1D today?”

“Blood sugars and A1Cs are just a number. Don’t let doctor’s bully you. “

“I want people to know that they don’t have to know a lick about diabetes and that’s OK. But if they don’t know, then they can’t have an opinion without that knowledge about my diabetic life! Always ask, don’t assume :)”

“What advice to do you have for someone who was just diagnosed with T1D?”

“As someone who was diagnosed only four months ago, I guess I’d say “take your time and take it a day at a time”. It’s ok to feel shocked and angry, and it’s ok to feel bad for yourself, and to grieve the loss of the “old you”. But I’d also say that without a doubt that you’re still the same person, you’ll be stronger for this, and you are not alone. “

“If you could meet an influential person and teach them about T1D, who would it be?”

“Prime Minister Justin Trudeau. I’d hope that if he understands this disease and has compassion for people with Type 1, that he’d be more empowered as the leader of our country to change and improve government funding, access to healthcare and medical technology for Canadians living with T1D. “

“T1D defines part of who I am, but it’s only one part of my existence. It also offers profound perspective on the sanctity and quality of life. Talk to me; we may learn something together.”

“What advice to do you have for someone who was diagnosed with T1D today?”

“Having Type 1 diabetes will teach your more about yourself then you would like to know at times, but it will also make you a stronger person. Connecting with other people living with type 1 diabetes is one of the best things that helped me start to love my diabetes and started to see the good that came from dealing with it.”

“Since you were diagnosed, what change in the industry has had the biggest impact on your diabetes?”

“I’ve had Type 1 for 30 years now, and in that time, Continuous Glucose Monitors have been the biggest change. I still remember the first time I used a CGM. One of the most amazing realizations was that I was doing okay. I finally had a visualization of the impact of exercise, of smart food choices, of pre-bolusing. It was the first time that I felt validated that these things DO make a difference. Of course, I also notice the things that are not going so well, but it helped shift my mindset to realize that data is powerful and that I am more than just a number. “

“Overnight lows are the scariest thing about diabetes to me. You aren’t sure if you are awake or dreaming, and you can’t really understand why your heart is pounding so much and you are covered in sweat. When this happens I’m thankful my wife is beside me to hand me a juice and say “Drink this” (I’m so disoriented that if she didn’t tell me to drink it, I wouldn’t know what to do with the juice). It would be even scarier without her there..”

“When I was fourteen years old, I developed Type 1 diabetes while away at summer camp on a 10-day canoe trip. I was already planning to go on a 36-day canoe trip the following summer with the other guys in my cabin, until I got the diagnosis. The summer camp didn’t feel comfortable bringing a newly diagnosed Type 1 into that remote environment, especially after someone working within the camp had to go home after having a number of seizures while on the job the previous summer. That rejection led me to Camp Huronda, a summer camp for kids with Type 1 diabetes that still had canoe trips, and it was where I would meet my wife, but I never wanted another kid to feel that rejection, being told they couldn’t do something. I still go on canoe trips every year and I’m still going to do that 36-day canoe trip.”