Unfollowed

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Craig: I'm Craig Stubing and this is Thicker than Water.

[56k modem]

That's what the internet sounded like to me when I was diagnosed with Type 1 Diabetes in 2001. I talked to my friends on AOL Instant Messenger and searched the web and asked Jeeves. Facebook, Twitter and Instagram weren't even ideas yet. The internet was a very different place than it is now.

[music]

I have in front of me a research paper from 2005 titled The Emerging Diabetes Online Community which is also known by its abbreviation DOC. The authors of the papers cited some reasons that people participate in the online community such as and I'm quoting, "Emotional support and social connection. To share personal experiences, to learn and share medical information and become involved in advocacy efforts."

The paper even goes through the potential risks of the DOC. Here's a section labeled Bad behavior and I'm quoting again. "While most people behave politely online, a small number do not. There are sometimes discussion on message boards or on blogs, about what various participants think is right or wrong." I mean, that sounds pretty much like anything on the internet today. Fast-forwarding to 2019, it seems like in additional learning how to test your blood sugar and give a shot. My aunt Laura is figuring out how the DOC fits into her life. She's already witnessing the good and sometimes bad behavior in the Diabetes Online Community.

Laura: I see three part of the overload is when you're on too much social media too.

Craig: Yes.

Laura: I guess what I'm trying to figure out is most of the social media sites, and I totally understand why are young people. I would say under 40, okay? To me, I'm 60. They have different issues than I have, like when they talk about somebody coming up and poking them on the desk cam. "I don't want people who would come up and poke me."

[laughter]

You know what I mean? I'm not a young girl in a bar. I mean, I could see people may be asking me but maybe not. I mean, it's a different kind of experience for me just being older. Anyway, when you read the social media things, I think you can get really scared. That's why before the trip, I must have stumbled upon somebody writing comments and there were all these horror stories and I thought, "I can't read this. I can't get into this rabbit hole. I have to just listen to the people who tell me how to prepare, prepare and just do my thing." and I think if I would have been too much of worrying about all what could happen, it would have made this the trip much more stressful for me.

Craig: Well, do you think signing up, following all these social media accounts is making Type 1 a bigger part of your life than it was before?

Laura: Well, sure, because I followed you, Beta Cell and I followed Type 1. I followed JDRF. I mean, I followed a few sites but I didn't follow a lot. Then I had to decide once I was diagnosed, how much do I want to follow?

Craig: That was all before you were diagnosed?

Laura: That was before I was diagnosed. I already was getting information but now, what I've done is I'll follow somebody who's diabetic and no offense to them but if I feel like I'm not feeling good after reading a lot of their posts then I unfollow. A lot of it is younger people. Like I said, some of the things that they're posting aren't relevant to me but some of them post things they do make me feel better. Interactions with other diabetics, positive interactions that they have in the community, things that they're doing, like your run but I'm trying not to do a lot of it.

That being said, a couple of my friends have said, "You should start an Instagram or you should do something to talk about your experience." Which I could do but being me, I would have to sit down and say, "Okay, what would this really look like? How would I do it every day?" There's all the parts of my life. Like you, you have to balance it. It's not 24/7 because then I think you get really burned out and then you get kind of into your own little world. The world is bigger. Yes, now I'm part of a new community which has been very welcoming and good but I'm part of a bigger community where a lot of them don't even know what diabetes is or in my smaller group, they're asking me a lot of questions because they want to learn more about diabetes.

Craig: Well, in the meantime, you are a podcaster so.

Laura: Right. Many people are saying to me, "You're podcasting as well?" "Yes, my nephew has a podcast and I'm talking to him." Yes, I said "People have written him and tried to help me and I hope along the way, I maybe help a few people."

Craig: Yes.

Laura: The other thing I want to ask you about with those people, I just ran across the site with that doctor, who says you should knock out all the carbs totally. They were all outraged about beyond Type 1 posting that easter egg count for carbs. My gosh, they were railing. I don't know how I came across this site but the people were enraged that, "You're going to kill all these kids. You let them eat whatever they want. If they're diabetic, they just need to learn that they can't have this stuff." I was just like, "Holy moly." I was like, "There's got to be a happy medium here somewhere."

Craig: You really opened up the Pandora's box of the dark side of diabetes.

Laura: I mean, they were so angry. I was just like, "Treat your diabetes, however you want to do it. I mean, if you don't want your kid to have any of this stuff and be on this limited diet, that's your decision." I don't think I would have let-- I don't think your mother would have wanted to let you go. She wouldn't have let you gone crazy because you were very restricted when you started.

Craig: Yes, I was on a meal plan at first.

Laura: You weren't messing around with your insulin?

Craig: No. The thing was, I was in the same boat as you are now.

Laura: Right. I think that's the way you need to learn. You need to do that first but then you decide how you're going to handle it. I was like, "Okay, they're not saying to give your kid a whole easter basket. All they're saying is if you give them two Reese's Peanut Butter Cups, this is how many carbs it is." It's like "My gosh."

Craig: Yes. This is the Dr. Bernstein people, right?

Laura: Yes. What does your doctor think? Have you ever talk to her about him? Is he like the dark side? Do they shun him?

Craig: I don't know. I've never actually asked her what she thought.

Laura: Right.

Craig: The one who essentially prescribed me more carbs because I was working out so much. I was going raw because I wasn't replenishing the glycogen stores in my muscles so she was like "You need to eat more carbs after you work out in the morning." I feel like if someone posts an article about that people would rail on her for wanting to eat carbs.

Laura: It seems like it was mainly parents but the were other people on there that I think had been a diabetics for years. Of course, they've been restricted their whole life which I get.

Craig: It is different when it's a parent of a kid. There's a certain amount of fear, scary disease. On one hand, you want to do whatever you can to stop something bad from happening.

Laura: Yes.

Craig: I think that comes from a good place, right? That's your parental thing. My kid alive and healthy.

Laura: Right. Right.

Craig: I don't know. Sometimes to me, it feels like the thought process becomes-- The lower A1C you have, the better. Even though there's a lot of evidence that says below a certain point, It's like diminishing returns, like having a 6.0 A1C is no worse than a 5.7.

Laura: What are you losing in regards to the stress of trying to get it so low? It's already enough in a day that we have to constantly think about what we eat, our insulin and our activity. If the doctor tells me "I want it below seven," I just would look at it and say, "Am I hitting that mark, below seven?" I have to trust somebody but this is why I was asking about it because that's the bad part about the internet. You get sucked into all these things. You need to really think about before you get sucked into it.

Craig: They went after me once.

Laura: Why? What did you do?

Craig: This was a few years ago. JDRF was doing this thing for National Diabetes Awareness Month and every day, a different person took over their Instagram account.

Laura: Okay.

Craig: Throughout the day, they posted three photos with just like a caption of something about their life. My first one was just like introducing myself. I don't even remember what the second one was. It was something I enjoy. The third one was ice cream, a picture of ice cream.

[laughter]

The caption was something along the lines of diabetes is hard, but you should be allowed to do the things you enjoy and if you can do it in a healthy way, why not? The people commented on the post. It was crazy. It was all of these people saying how irresponsible JDRF was to post something like this, that their kids would see it in one ice cream and how terrible it was. JDRF still tells stories about the ice cream post, and how it utterly backfired. What's your thoughts on these things? It's like a dietician perspective.

Laura: It goes back to, and you'll laugh at this. When we were young and her family doctor was Polish, but he would always say, "Everything in moderation." That's basically when we tried to do it in our house and then tie it to patients in the same way. "Okay. If you're drinking two liters of soda a day, that's not healthy. Either you have to switch to diet because if you can't give up soda. Or if you're not, then you're going to have to figure out a way that you can only have one glass a day and that's your one glass a day."

It's hard for people, especially in the US, because it's more about portions. That's why I say the moderation. I don't think it's that unhealthy to have a cookie a day. You just can't have 10 cookies a day. If you're an active person and you eat relatively healthy, one cookie a day or that half a cup of ice cream isn't going to be horrible.

Craig: When you screen these people online, these like angry people, does it make you want to just like delete your account?

Laura: No, because the beauty of the internet is you can start to follow something. I didn't follow any of those and like I said, I'm not bashing them because I think everybody has a right to treat themselves the way they feel is best, and with consultation with their doctor, but I can only absorb so much stuff. I will follow something, some people, and if it's not bringing me anything, it's not after two weeks, you unfollow them.

If their philosophy about how to treat themselves, whether it's diabetic or it's exercise or it's normal eating, I'm not going to follow it.

That's their right to do, but I don't have to follow it. I really want it to be people that I get something from and I try to bake it a variety of things. I try not to lean on like-- I have embroidery things I look at. I have some healthy more my dietetic looking sites, travel, the city I live in. You need to have a balance in what you're looking at. I don't want my whole feed to be everything diabetic.

Craig: I pretty much unfollowed everyone who's diabetic who I'm not a friend with.

Laura: It was too much, right?

Craig: Well, it was too much, and then there was a point where I would just kind of was like, "How much do I care? I don't care what your blood sugar is? I don't care what you ate for lunch." I can only give my 100% to certain things. There is a limit to the amount of energy I have in a day and I'm going to focus on the things that make a difference or at least stuff that I enjoy and I couldn't pretend not to care about where someone decides to wear their Dexcom.

Laura: Yes, you just have to pick and choose. Like you said, people who have gone off of social media for breaks.

Craig: It is funny. I have a lot of friends now that I've met through diabetes, but it's not the thing that we talk about all the time.

Laura: When you have a child in school and you meet other parents, some parents you become friends with for life. Our kids are all grown up, the kids and the kids do daily activities are no longer the central part, but we're all still friends now, so it's the same thing. I would say it's pretty the same thing with diabetics. That's healthy. I would think that's healthy.

Craig: I think so.

Laura: These are people who-- As the example of us with, when our kids were younger, they've been with you the whole time, your kids have grown up, they know your kids, they know all the things you've gone through, they know what your life is, and it's the same with you, with they know about your life, your job, what you do, your family. It's just that little part that bound you together at first.

Craig: This is kind of the light side-[crosstalk]

Laura: It's kind of good to think about it that way though because then you realize even if a lot of your friends are diabetic, that's not why you're friends and that's a good thing.

Craig: On the next episode of Thicker Than Water, aunt Laura visits her endocrinologist for the first time since being diagnosed.

[music]

Craig: Thicker Than Water is a production of Beta Cell and it's produced by me, Craig Stubing. As always a very special thanks to my aunt Laura. Our theme song is by Nina Ragonese. If you haven't yet, subscribe to Beta Cell, wherever you listen to podcasts to get all of our shows downloaded onto your listening device as soon as they're available. If you love Thicker Than Water or any of the Beta Cell shows, you can support us on Patreon. Not only will you get the satisfaction of helping the show, but you'll get access to our exclusive supporter-only-podcast out of range after dark.

I'm Craig and this is Thicker Than Water.

[music]

Laura: Well, don't have me bashing all those people. I don't need them attacking me. It's with everything online. There's always people who are one way and then people on the other way and it's like the middle is so hard to be in.