Beta Cell #009: Trevor Torres Transcript

Full Episode

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

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Most of the conversations about type 1 diabetes are pretty pessimistic. We talked about how hard it is to count carbs accurately, the social stigmas, long term complications and as I had to deal with last weekend, trying to keep your blood sugars in range while you have the flu. Yes, before you ask, I do get my flu shot every year and you should too whether or not you have type 1. I was first introduced to Trevor in a YouTube video a friend shared with me.

Trevor: I was diagnosed with diabetes probably two years ago. I used to describe myself as a professional diabetic, except the problem with that is I haven't figured out a way to get paid yet. So until I do that, I like to call myself a diabetes evangelist, because I would recommend type 1 diabetes to anyone and I'll get to that in a second.

Craig: Trevor was 16 years old when he recorded that. Today, he's a senior studying cognitive science at the University of Michigan. What fascinates me most about Trevor, is that he focuses on the positive aspects of type 1, the ways in which living with this disease has helped him grow as a person. For this episode, we're doing something a little different. We're going to use cognitive science to look at how we can systematically change our negative feelings towards type 1 diabetes.

We'll talk about how to get better control by changing your habits, making your care feel rewarding, and why there's no such thing as bad blood sugar. You call yourself the diabetes evangelist, do you want to explain what that means?

Trevor: When I came up with it, it was a joke and it refers to the fact that I would often go around saying I recommend diabetes to everyone. For various reasons, I became a running joke in my friend group and so forth, that if somebody was having almost any problem in their life, I would come up with a way that diabetes would help them with that problem. Some classic examples being food and exercise and so on. People would say, "Man, I wish I could just get myself to eat better." Then I would say, "Dude, you should totally get diabetes, it'll force you to get right on your diet."

Craig: Do you still feel the same way about diabetes, that it's something everyone should get or try?

Trevor: I'm not as hype about it anymore, to be honest, but I still think it's been an overall positive thing in my life. I think it's won me a lot of discipline, a fair amount of self-confidence and it has had some acute impacts on the way I go about eating and exercising and so on. I don't think that everyone should get it. I feel like the lessons that I learned from it could be learned in easier ways, but I definitely think if you do have it, you should figure out all the opportunities that it might have to make you a better person. Which sounds cheesy but I think it's true.

Craig: Besides being more conscious about what you're eating and exercising, what are some of the other ways that diabetes has helped you grow?

Trevor: Socially, it does force you to be able to handle weird conversations and weird situations. I think I've been better equipped to deal with strangers partly because of diabetes. I'm a very introverted person, I have social anxiety and I feel diabetes has been one of the ways for me to realize it's okay to start a random conversation or make a stranger perplexed. Like, that's not something that you have to feel bad about.

Craig: How did you-- I guess, get comfortable with type 1 diabetes?

Trevor: I think as far as the stigma goes, I want to say it started right away. Because I don't remember even having a concept that it could be embarrassing, until later on when I started meeting other people with diabetes, but I'd never considered it something wrong with me, or something that I should hide from other people. I'd had asthma and eczema and a couple of other autoimmune diseases and since getting diagnosed with diabetes, I've also been diagnosed with celiac disease, but before then, it was just like, "Whatever medical conditions you have, you deal with them and anyone who asked questions, you explain it to them."

It's just some other part of my personality. I would always check my blood sugar at the table, or in the middle of whatever we were doing and usually, it started a conversation, but I was fine with that.

Craig: If I go up to someone who's recently diagnosed, and I say, "What do you think about type 1 diabetes? They're going to probably say, "It's a pain in the ass." How would you get them to look at it differently?

Trevor: Oftentimes, people will talk to me about what do I do with diabetes that they can potentially do as well? That's not to say I'm better at managing my sugars than anybody else. I don't think I necessarily am. I think I have a decent handle on it but I'm no expert in that area. I am pretty good at staying positive about it and sometimes I feel I cheated because I just got off to this positive start. I looked at it in a good way from day one and I just never really changed that very much. The worst thing I do is ignore my feelings related to diabetes.

Sometimes, it's hard for me to see somebody that's really struggling with it and say, "How do you get out of that?" Because the best way obviously, is to not get so down on it in the first place. I feel it's often harder to cheer yourself up than it is to just keep an even keel. I think it would definitely depend on the person but if I was just giving general advice, I would say, "This is something that you're going to have no matter what, so from a practical standpoint, you have to make a choice to how you're going to deal with it, you can't just let it run its course." The best thing to do is just to choose to deal with it in a positive way, which is not to say, choose to have positive thoughts about it, that's almost impossible.

Rather, it means systematically changing the way that you implement your diabetes action plan, to the point where rather than feeling annoyed by any step you do; that's overshadowed by a sense of pride and doing something well and making yourself healthier and getting to the point where your daily interactions with diabetes don't have the sting of "This is something I have to do," in the way that flossing still does for me, but rather has the sense of, "I did something good in the way that exercising does for me." There's a lot of people that exercise and they see it as a chore, but if you get good at it and do it long enough, and approach it in a certain way, you can slowly change the way you interface with it to the point that you see it as a good thing. I realized this is really generic, I can get more detailed if you want.

Craig: If you were to get more specific, I'm just curious as what that would be?

Trevor: I think the first thing that's important is, you're going to have to get your numbers in front of you. Try to figure out your A1C or general blood sugars and see what are you currently doing with diabetes? What do your current habits look like? Then changing them systematically, figuring out what is causing you the most consternation with diabetes. Like, are you most upset when you have lows during exercise? Or are you most upset when you have to wake up during the night? What things that happened to you on a fairly regular basis are causing you to hate diabetes the most?

Then figure out one of those and identify a way that you can habitually make that better. I don't know. For me, I tend to get high blood sugar, late at night, a fair amount, but I have a suspicion that there are a lot of things that a lot of people with diabetes run into where it's like, "This happens to me, and I know what I need to do to deal with it but sometimes I just don't do it as well as I could." If I were going to go through this myself, what I would do is make sure that I was really diligent for maybe 30 days on giving myself Lantus at the same time every day, that's the long-acting insulin that I use, so I don't get that high before bed. I would set up accountability systems to do this.

I'd find somebody else that had diabetes and make a bet with them to see who could be more consistent in this one thing that we're trying to change. Then I would hopefully get to the point where giving myself Lantus is something that I not only do automatically at the same time every night after doing it religiously for a certain period of time but also something that I associate a positive reward with, like, "I'm giving myself Lantus. I'm taking control. I'm doing something good here." I would make sure to--

Even sometimes out loud, congratulate myself for sticking with this and that is a way that you would change an individual habit with how you approach diabetes, and it would simultaneously change your numbers, make them better, and also change your attitude and hopefully, you can go through and systematized the way you approach diabetes, holistically, keeping your attitudes in mind so that you can deal with it in a more positive way.

Craig: These are very obvious cause and effect and because you manage diabetes yourself when the effect doesn't turn out the right way, you blame yourself as the cause.

Trevor: Yes, and it's really hard not to do that. If I forget to give myself Lantus, for instance, the ideal situation would be to say, "Oh, well, forgot my Lantus. Hopefully, I'll do it better tomorrow," and just refocusing rather than beating yourself up because all beating yourself up does, with any mistake you make in diabetes, it just increases the association of negative emotion to the subject of diabetes.

Craig: Which you can't change and so those emotions will just build up over time.

Trevor: Yes. The only thing to do is to slowly replace those negative emotions with neutral or positive emotions. My ideal scenario for everyone eventually would be that diabetes doesn't feel like flossing in the sense that it's something you have to do, and you're okay with it, but rather, it feels more like exercise does for me right now that maybe it's more challenging, but it's really rewarding and you feel better for having done it well.

Craig: Do you feel that way about diabetes right now?

Trevor: I feel that way about diabetes overall. I don't think I feel that way about diabetes in the last week because I've had higher blood sugars in the last week, I feel more like flossing right at this moment I would say.

Craig: That's the dilemma of diabetes that what you're advocating with changing our opinions on diabetes is very macro level whereas we live with it in the micro day to day blood sugar by blood sugar, each individual test. You have to realize that I just tested, I'm 240; that's a bad number, but I'm going to test myself five times a day, 365 days a year, for the next what 60 years. What percentage of all those tests is this individual one that it really doesn't matter?

Trevor: You could even try to detach yourself from it a step further and say, "The way I treat it--" One of the people on my medical team told me to look at it as though there are no good and bad numbers. Your blood sugar is 80 for two weeks, you never have a high or low; that's no better than if your blood sugar is 300, 50 and just switches back and forth. All there is; is feedback from your body and actions that you can take in the future but there's no good or bad. That's the way I like to look at it because I try to not have any negative emotion associated with it even when it's justified.

This whole thing with diabetes is all about almost tricking my brain to not get depressed about it because I know that if I do get down about it; that's the moment that I start doing worse. Any individual mistake isn't going to hurt me, the only thing that's really going to hurt me is a prevailing sense of dread that I'm never going to be good at diabetes. That's what I'm really trying to avoid and secondary is trying to have good blood sugars.

Craig: Why is there no such thing as bad blood sugar? You know there's a range you're supposed to be in and that's good blood sugar, so how can you not have bad blood sugar?

Trevor: I don't think that the range you want to be in, I don't consider that a good blood sugar either. I just consider it, this is what I'm aiming for. This is almost a bit of mental trickery I'm playing on myself. I like to look at it as if there's nothing you could do to change your number then there almost should be no emotional attachment to it in the sense that you've checked your blood sugar already, all you can do is learn from it and take the next action. The more you ascribe negative feelings towards it, the less likely you're going to want to do well at diabetes in the future.

It's not that whether a blood sugar is objectively good or bad it's more of practically what's the best attitude to have towards it, it's next steps after the no use crying over spilled milk platitude, it's an actual implementation of that for diabetes, no use crying over a low blood sugar.

Craig: The reason people have these feelings about blood sugar, if let's say my blood sugar is high, I can look back and say, "Oh I should have given more insulin for that scoop of ice cream and that's my bad."

Trevor: I actually notice this in the way that you were talking earlier on in our conversation, part of the difference between the way I think about it and maybe other people might be the amount of random chance that in my head I assign to it. If you'll permit me to take a step back and talk about a psychological concept and then move back in just for a second. Interestingly in studies, it's very replicable when you're driving if you do something that's against the rules of the road, you attribute it most of the time to a random event. Like, "Oh, I just didn't see him in my mirror or my phone went off, something else happen that wasn't really in my control and that's why I disobeyed the rules of the road there."

For the most part, if somebody else disobeys the rules of the road, you're like, "I think it's because they're a bad driver." You're like, "Why did you cut me off? You're a jerk." Part of that is just because we are bad at figuring out how much random chance influences something and how much the actions of people influence the outcome. I think it's an open question if you have low blood sugar how much of it was just bad luck? You got a scoop of ice cream that happened to be more sugary or you misread something on the label that just sometimes you're going to mix up numbers. Many variables going on with the managing of diabetes but the way I look at it is, all I can do is do my best to control as much as I can.

The actual results I get are they're so influenced by randomness that me having a low blood sugar sometimes isn't my fault and me having a perfect blood sugar is sometimes isn't because of something great I did it just happened to be, I did my best and it happened to work out or it happened to not work out. How can I do my best better? I will always try to learn more about that but every individual result there's so much chance in it that I can't really blame myself for a given blood sugar. That's the way I look at it, I don't know if that's true but I think it's a healthier attitude to have.

Craig: It makes sense. Even when I was traveling and I had a breakfast buffet at a hotel and three hours later my blood sugar was perfect, I could look at my continuous glucose monitor and I could see as my blood sugar went up as I start eating and as the insulin kicked in it came right back down to the hundreds and was perfect. I could give myself a pat on the back and say, "Good job Craig, you nailed that," when deep down I know that it was a random guess, maybe not completely random. I looked and I made an educated guess but who knows how much orange juice was actually in that glass of orange juice? Who knows how many carbs were in that pastry? I just guessed and it turned out all right.

Trevor: Even like who knows how much the amount you walked that day during traveling and the amount of sleep you got like how that impacted your blood sugar. It's just impossible to calculate.

Craig: Or how the insulin was just getting absorbed into whatever I was wearing my pump that day.

Trevor: I will say don't use this as an excuse to take away the good feeling of managing your blood sugar well but more use it as a way to let go of the negative blood sugars and just try to do better in the future. I hope nobody listens to this and goes like, "Even my good blood sugar wasn't because of me."

Craig: I was going to ask you a question about this comic book you worked on?

Trevor: Yes.

Craig: Do you want to tell me what this comic book is all about?

Trevor: The comic book is called Insuman, I worked with an art student at the University of Michigan as well. I was a research assistant, so a project I came up with for the endocrinologist I was working with. The idea was this person with diabetes, they're newly diagnosed with it and then they go through their first day of school, having diabetes. The same thing happens in both stories as far as they end up like getting high blood sugar in both stories and then they have to like try to play basketball and see how it's going to affect their exercise and everything.

The only difference in the two stories is the way the characters react and at the end it's meant to show that you're going to run into setbacks no matter what you do with diabetes but often times the thing that can make the difference in how you deal with it in the future is how much you allow yourself to get down on it versus how much you allow to push you.

Craig: Explain to me how this idea came about?

Trevor: We were trying to optimize the experience of coming to the endocrinology clinic and we were looking at all levels of it. What are people doing in the waiting room? What's the actual procedure for a patient to patient visit? It was really cool. I got to follow Dr. Joyce Lee is her name, she's got some really cool stuff on the interwebs and I was able to follow her around and see her speak to patients and everything and this was just an area that we thought we could improve of. If this is something that you get in your little like goody bag when you're first diagnosed with diabetes. I got the big pink panther instruction book for how to deal with everything.

They don't really tell you much about your attitudes as far as diabetes goes and how you should look at it, they just tell you how to handle the technical side and we thought this would be a cool way to improve the patient experience.

Craig: You felt that was something that was missing from your welcome to diabetes kit?

Trevor: Yes, I feel it was something I got accidentally just because I had a team of really good and really socially savvy healthcare providers, but I think I could just as easily with other healthcare providers I have had experience with before and since, if they had been on my team I don't think I would have been instilled with this attitude.

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Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing, and our theme music is by Purple Glitter. You can find Beta Cell on Twitter, Facebook, and Instagram at @betacellpodcast, be sure to subscribe to Beta Cell on iTunes, Stitcher, Google Play Music or wherever you get your podcast to get new episodes delivered automatically to you. I'm really excited to announce that Beta Cell can now be found on the NPR One app if you've never used NPR One it's like Pandora for podcast, you follow shows you like and it will recommend other shows based on your preferences. Download it today and be sure to follow Beta Cell.

I'm Craig Stubing and this is Beta Cell.