Matt Vande Vegte

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

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Craig: This is Beta Cell, a show about people living with the type 1 diabetes. I'm Craig Stubing.

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Craig: Type 1 diabetes can often feel like a weakness.

First, your immune system is killing off the insulin-producing beta cells in your pancreas in a blatant act of self-sabotage. Testing my blood sugar to see if I'm okay is a constant reminder that I am, in fact, not okay. I have to carry around a bag of fruit snacks in case my blood sugar goes low. Superman got to fly at the sun to revive himself. I have an assortment of grape and strawberry chews that you pack in a first-grader's lunch box.

In those first few moments after diagnosis, even if you're on the varsity rowing team at San Diego State University like Matt was, it's hard to see beyond the fact that you now have a chronic autoimmune disease that you didn't have when you walked into the doctor's office.

How was the diabetes diagnosis first presented to you?

Matt: Oh man. By [chuckles] a doctor who was in a rush. The doctor came in, told me I could never have sugar again because diabetics can't have sugar. He gave me a vial of insulin, said, "You're probably going to experience complications down the road. You may lose limbs. You could probably die earlier. Have a great day," and sent me home. There is very little instruction on what insulin does to my body, how, if I take too much, it could be very harmful and very little education overall.

My parents worked for Kaiser and they are close friends with an endocrinologist. My parents called up their endocrinologist friend. They came over and educated me, spent a lot of time helping me out, teaching me about carb counts and insulin ratios and all that stuff. Had I not had access to that family friend, I would have been in for a very rude awakening.

Craig: Did that scare you at the time, those long-term complications, just going to lose your limbs, going to go blind, have fun?

Matt: Absolutely. I was terrified. I know they were using scare tactics to get me to take control of it, which I don't believe is the right way to go about it, but it worked on me because, obviously, I don't want to lose limbs. I don't want to have organ failure or experience any other complications. It shot me into this mindset of, "I have to take care of this or bad things are going to happen."

Ultimately, that wears off. I got to a point where I did not care about testing my blood sugar and I would take my insulin. I would give rough estimations of the carb counts and attempt to give the right doses, but I would never check blood sugar before meals. I wouldn't check after meals. I wouldn't check before bed. It was rare that I would check. Most days, I didn't even know where my blood sugar tester was.

Looking back, I can see how extremely dangerous that was because I was a very active person. I would eat late at night. I remember in college, I used to inject for a massive carne asada burrito at eleven o'clock at night. I eat it and go straight to bed. [laughs] No testing, no caution, nothing. I just would go with it. If I go low, I'll probably wake up. That was my mindset.

It was irresponsible, but I also will lead that back into. I was not fully educated about how to take care of my diabetes in the best way possible. I will also attribute a lot of that to rebellion. I was diagnosed in my late teenage years and I just like to pretend that I didn't have diabetes. I take my insulin and then ignore it. I take my insulin and then ignore it. That was just how I took care of it for the first couple of years, which is scary to think about now.

Craig: Why did you pretend you didn't have it? Are you embarrassed?

Matt: A part of it was an embarrassment. When I would test blood sugar or I would inject, if we were at a restaurant, I would excuse myself. When the food arrived, I would go to the bathroom, lock myself in the stall, and then I would test my blood sugar and take my injection and then walk back out like nothing happened. To me, looking back now, I can see that is because, before my diagnosis, I felt like Superman.

I was this collegiate athlete. I felt unstoppable. I was young and stupid. After diagnosis, I felt that diabetes made me weaker. I thought that people would view me differently and assume that I couldn't do the same things that I used to do, that they would assume that with this lifelong disease that I would become weaker. I wanted to hide that from them so I could still maintain that image of, "I'm superhuman and I can outrun you." I was definitely embarrassed initially.

Craig: Do you think you saw yourself as weaker?

Matt: Looking into it honestly, I would say yes. Because before, there was virtually nothing wrong with me. Now, there is something that just wasn't right. Something in my body that was broken and I initially didn't feel whole. I felt like there's a piece of me missing and that, as a broken human, I may have internally felt less than. It's a sad thing to think about it now that I allow myself to think that, but it's also difficult to avoid those thoughts when you do come into a position of being diagnosed with a chronic lifelong illness.

Craig: How did that start to change?

Matt: As far as the burnout with testing goes and being a responsible diabetic, actually, taking care of myself, I would attribute that to family and loved ones. Now, my parents, non-stop. Here's the scary part. I was diagnosed in college. Partway through college, I left to pursue modeling and acting. I moved to New York. While I was living in New York, I still wasn't testing my blood sugar regularly.

On my own across the country, my parents are worried. I'm still eating late at night and not testing and going out for workouts, running, and doing all sorts of stuff without testing my blood sugar. Every day, my mom would text or call and send little reminders, "Hey, maybe you should test your blood sugar today. Maybe it'll be a good idea." She wasn't trying to force it down my throat but trying to send those gentle reminders. Over time, I would try to remember to test my blood sugar because I knew that was the right thing to do.

I wanted her to feel secure and happy with me testing my blood sugars and I didn't want to make her worry. Further down the road, I was dating my girlfriend who is now my wife and we were dating long distance. She also added those little hints in of, "You should probably test your blood sugar." She was amazing back then. She still is, but she did all of her research as soon as she found out how serious diabetes really is. She learned as much as she could and she's like, "No, you actually do need to test your blood sugar.

It's not just an optional thing. You should probably test it right now." With my parents and my sisters and, eventually, my girlfriend, all of them supporting me in that led me to want to change and become a better person so that they wouldn't have to worry as much. Ultimately, that led me into realizing how important it is for my own health. Once that came into the picture, it snapped. I was like, "Okay. Snap into place. This is what I have to do. I need to leave my life as healthy as possible and do what I can to control this disease."

Craig: Was that a big change, do you think? It was probably gradual.

Matt: It was gradual, yes. They led me in to, "Try to test your blood sugar once a day." "Okay. I can do that." "Try and test it twice a day. Try to test it at least before meals." Over time, I was getting more and more information and noticing, "Okay. This is what happens when I eat that type of food and learning how to better manage it," but it did take time.

Craig: How much now does having a support network of friends and families who really understand diabetes impact your life?

Matt: In incredible ways that I never thought possible.

Craig: Does it ever get annoying?

Matt: They are amazing about it. My little sister actually has type 1 diabetes as well. I have three sisters, so one of them has type 1. She got it about a year and a half or two years after I did. I've noticed that I'm actually more annoying to her than she is to me. She went through a similar phase that I did. She still tested her blood sugar. She was responsible in that light, but she doesn't let diabetes slow her down in the sense of, if she's low, she just continues on. I'm looking at her. I'm like, "Shouldn't you have some sugar? Shouldn't you test your blood sugar again?" She's like, "Calm down. I'm fine. I got this." I'm just trying to help. I realized over time, me trying to help also could come across as annoying, so I had to tone it back a bit.

Craig: How did you feel when you found out she had type 1 as well?

Matt: I got the phone call. I still remember it vividly. I was in my Christian fraternity house at San Diego State. They told me she was in the hospital with symptoms of type 1. They had just given her, "That you may get this diagnosis soon." Sure enough, she got the diagnosis. I drove home immediately. On my way home, I broke down crying.

I'm not usually one to cry, but I knew the change of life that she was in for. I knew how difficult the road ahead would be for her to learn all this new information and take on these new responsibilities that nobody should have to deal with. For her, especially in high school where kids can be so judgmental and mean, I was heartbroken. I really was. I was more heartbroken when she was diagnosed than when I was.

Craig: What did you say to her when you finally got to the hospital?

Matt: By the time I got to her, she had already come home from the hospital. [chuckles] I looked at her and she saw me come to the front door. We both started crying and I went and gave her a hug. While it was one of the saddest moments that I can remember, it also brought us closer than anything ever had in the past. We weren't very close growing up because she was the youngest child and I was the oldest.

That diagnosis gave us something in common that no one else had. We knew that we were in a fight together. It was something that brought us together that we wouldn't have seen before. As a result, we've grown closer over the years. We have a special connection that we would not have had if diabetes weren't in the equation. However, that being said, I still hate that she has to live with this disease.

Craig: After she was diagnosed, do you think that changed your relationship to your diabetes, that you somehow had to show your sister, "This isn't so bad. You can do these things with it," as opposed to if you didn't take care of it, then she'd be like, "Oh, I guess I don't have to take care of mine either"?

Matt: I would say that, initially, yes. It showed me that I needed to take care of myself to be an example for her and to show her that we're fighting this thing together, but there was an interesting turn of events. Just over a year ago where I faced some very challenging times with diabetes, so much so that it wrecked me mentally. I had some severe lows in a foreign country where I wasn't receiving the medical care that was needed.

I honestly thought that I was going to die. Took the next flight home, spent a lot of money on emergency care, and got back into the swing of things. Mentally, I was not the same. It took time for me to build back my confidence with diabetes care, but also with just living my life. It was partially due. Now, I'm going to give a lot of credit to my wife. My wife helped me through that immensely. She is an incredible support.

My sister, watching her take care of her diabetes, go about her day. She'd be sitting in the '70s and not freaking out, whereas I would be panicking because I had a flashback to where I almost died. Seeing her go through that so calmly showed me that what I'm panicking about is not logical. I need to get my crap together because my little sister is taking care of her diabetes better than I am.

She motivated me. She inspired me to take back that mindset, that fearless mindset that I used to have. The tables turned and she had turned into the one who was in control, the one who was motivating the other diabetic. I got to see her in that new light. Yes, she is my diabetic hero. She was there for me when I needed her and she helped me get back on track.

Craig: You started FTF Warrior? Why focus FTF on diabetes?

Matt: My wife and I, when we were living in LA, decided we wanted to make this program. Initially, it was for everyone with autoimmune diseases because I have type 1 diabetes and my wife has Crohn's. We thought we could help the autoimmune community with their life and fitness, nutrition, and all that kind of stuff, but then realized we would be more helpful if we specialized with one.

We chose diabetes and FTF stands for From the Fight, which is what Vande Vegte, our last name, means in Dutch. It's also what we truly believe every diabetic embodies. We are all from the fight. We're fighting this disease every day. We don't have a break. There are no vacations. You can't rent a pancreas for a couple of days while you go enjoy your life. You're stuck with this.

We have to accept that and move on and then continue on with our lives, continue on pursuing our goals, chasing our dreams. Warrior obviously comes from that same aspect. Also, we all refer to ourselves as warriors because, like I said, we're fighting this every day. FTF Warrior was built around diabetes. One, because I have type 1 diabetes. I know the struggles that exist with type 1 diabetes.

I also know that there is a huge gap where when you're first diagnosed, you're not necessarily educated on what you have to do to take care of yourself in order to avoid the complications. They might say there are complications. In my case, you just said don't eat sugar and good luck. [chuckles] I thought it would be beneficial to create a program that would educate diabetics on what to expect, what they can do to better their outcome, what they can do to thrive in life and to not let diabetes hold them back.

Craig: How do you pursue this business and grow this business that's focused on what health and wellness and fitness with diabetes when you yourself are kind of struggling with diabetes?

Matt: That is exactly what I said to my wife. I came back and I said, "I don't know how I can coach people if I'm struggling." She says, "Well, first off, you need to let them know that you're struggling. You need to show them that you're a real person. You're not perfect and no one's perfect." Ultimately, I started posting about bad blood sugars. I showed screenshots of my CGM going wild from 70 to 240, back down to 90 and just doing crazy stuff to show that I'm a real person and to show people that it's okay to not be perfect.

It's okay to have bad days. That time frame that I went through reminded me the need for mental health attention with diabetics and that it's not widely addressed. I was never told when I was first diagnosed that the mental side of diabetes can get really complicated. When I was first diagnosed, they didn't warn me that depression could be a thing, that anxiety could be a thing. It gave me a new insight into the mind of someone who is struggling with mental health and, ultimately, how to live and then thrive in spite of that.

Craig: After you were diagnosed and hiding diabetes, whether from other people or even from yourself in a sense, what do you think that person back then would say if they saw you now having a career defined by diabetes?

Matt: Back then if I saw myself now, I would be shocked. I would tell you, "That man is an impostor." That is just not possible because, initially, like I mentioned, I wanted nothing to do with diabetes. I wanted to inject so that I wouldn't die and then forget about it. I did what I needed to get by and then I would go and live my life. I did not want to be associated with it. I didn't want to be known as having diabetes because, to me, that equaled weakness.

I didn't like the idea of that. Flash forward to where we're at now, I am sad that I was so embarrassed by that and that I didn't embrace it earlier, that I didn't see the difference that I could make earlier. Honestly, there was a lot of growth that needed to happen. When I was first diagnosed, I was a much different person. I was a lot more shy. I was immature. I was irresponsible.

Through those years of growth, I learned a lot. I learned how to effectively help people and I learned from my own mistakes. That's a big one. Trial and error. I went through a lot of mistakes, a lot of hard times. I had to learn how to work through that. It was through learning how to work through those dark times that I gained more of an appreciation of the struggles that people go through. It formed me into who I am today.

Craig: Do you still see type 1 diabetes as a weakness?

Matt: Absolutely not. That's one reason why we call it the warrior. We are going through this fight every day. Most people in the world don't understand the intensity that this disease has and carries with it because if we make a wrong decision, it could influence the rest of our lives. It could end our lives. The amount of mental power that it takes just to get through a day, especially for those who have a harder time controlling their diabetes, is seemingly endless.

To get out and go to the gym, you're facing your fears. To inject insulin, you may be facing your fears. To talk about it in public, you may be facing your fears. The world needs to know. Not only was this not our choice, but we're fighting. We are warriors and we are strong. In spite of having this disease, we still push through. That is the mindset that I hold currently, that this disease does not change who I am, does not make me weaker. Rather, it allows me to show the world that I can be stronger than them even with the disease that is labeled as chronic and lifelong and has so many different stigmas attached to it.

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Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing. Our theme music is by Purple Glitter. If you love listening to Beta Cell and are curious how you can get even more of it to listen to, you can find just that by joining the Beta Cell Fan Club. When you join, you'll get tons of bonus clips, outtakes, extra never-before-heard content, as well as access to our fan club-only show Out of Range After Dark. Visit betacellpodcast.com for more info.

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Craig: I'm Craig Stubing and this is Beta Cell.

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Craig: This episode of Out of Range is brought to you by Companion Medical, the makers of the InPen smart insulin pen. I haven't used the InPen myself, so I called up my friend Ella to get her opinion.

Ella: I love how InPen keeps track of my insulin doses. It logs what time I take my insulin, how many units I take, and then also keeps track of how much insulin I have left on board. It's really made my diabetes management so much easier.

Craig: For more info, visit companionmedical.com.