Beta Cell #008: Libby Russell Transcript

Full Episode

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.


[music]

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

Libby: I'm Libby. I am a human being. [laughs] I live in Brooklyn, New York. I am a type 1 diabetic and run the blog called The Sugars that I started four or five years ago.

Craig: I first started following Libby on social media right after I launched Beta Cell. I immediately connected with her dry sense of humor, her ability to talk about the most awkward parts of having type 1 diabetes without it fazing her and mostly how she didn't let type 1 gain her way. For instance, Libby seriously loves her bagels, even though we all know how bagels are made specifically to make blood sugar skyrocket.

If half her pictures won her reaching down her shirt to clip her instant pomp on her bra, you never know she had type 1. If you've never seen her pose, pause this right now and find @ihavethesugars on Instagram to see what I'm talking about. You're back? You see what I mean? She's hilarious. I knew I had to get her on Beta Cell and see what made her click.

I was surprised to find that she's exactly how she seems online. Just a warning. Libby likes to swear. If that's not something you want your kids hearing, maybe let them skip this one. Also, don't let them read her blog, because she swears a lot there too. July 2012 was your first blog post.

Libby: Gosh, that feels like yesterday, but also about a hundred years ago. It was like the eighth draft of many attempts. I attempted this blog many times before I actually launched it.

Craig: Tell me about that.

Libby: Right after college is when I first started to have this weird pull to do something with this.

Craig: With diabetes?

Libby: Yes, everyone I talked to was always like, "Man, you seem like you would be doing something with your voice." I always enjoyed writing and was a super email kid. Growing up I always wrote everything, I have stacks of notebooks of these weird poems and songs and things I used to try to articulate my feelings. Right after college, I made all these horribly designed, horribly organized attempts at a blog. That was 2010, so 2012 is when this finally had lift-off.

Craig: Was that just finding the right voice for the sugars?

Libby: I think it was. I think it was a voice sort of a discovery process. It also- it's kind of an emotional journey really being willing to go all-in on the thing that is also the biggest pain in the ass in your life. Yes, for me it was just like fully committing, which is just sort of part of everyday story. I think it's finding a place for it in your life that you're comfortable with.

Craig: It's a pain in the ass like you said, but it's also really personal. I mean, blood sugar is literally your blood. What's more personal than that?

Libby: Super intimate. I'm very comfortable being the one that's talking. It was way easier to do it when you're hiding behind a computer screen. I think at first for me it was just a spaced vent at the time. I think the only people that read it were my parents. I get an email from my dad after every post. [laughs] "That was a good one, maybe next time take out a few of those F-bombs." It was a slow start, but it was about finding a place and a voice.

Craig: Why did you feel like you needed to vent so much?

Libby: I think for me being diagnosed at 17 was a really strange experience. Because when you're a teenager, you're all over the place and you're trying to find yourself. I was really lucky as a kid. I had a really easy childhood. I was healthy, I was happy, I have an amazing family. I never really- and this is going to make me sound ridiculous, but I never really struggled with anything, aside from your pretty standard teenage girl as she is.

I think for me, I was so accustomed to being comfortable that when this hit me, I freaked out, because I was really not good at dealing with adversity because I had such little experience in it. I took it all on myself to just not change. I never really wanted to lose my stride or slow down because something was now different about me. College was a lonely time because I felt almost like I had a secret. I had this thing about me that was really, really, really challenging but that no one really understands. It wasn't really worth investing a lot of time in it.

For me, I just started to get to a place where I can really take that feeling anymore. I needed to do something about it, really. I needed to talk to someone, but without feeling judged or without feeling weak or misunderstood. It's so frustrating having to explain diabetes over and over and over again. I figured if I just yell at a black canvas, I wouldn't have to over-explain anything.

Craig: How much of keeping type 1 is secret? We're just not wanting people to judge you on whatever limited knowledge they had of type 1.

Libby: I think for me a lot of it was-- I was young. I was emotionally immature. I was afraid of being different. I always would get so embarrassed when people would ask me, "How are you doing? Are you doing okay?" I'd be like, "I'm fine." I didn't like feeling damaged. I still wanted to be cool. I felt uncool having diabetes. I still sometimes feel really uncool when I'm reaching down my shirt in the middle of the meeting trying to make sure my client doesn't see me.

That's not cool. That's weird. Man, I think I was just really insecure. I was really afraid of people abandoning me or leaving me or treating me differently or not inviting me to things. I was such- and I still am the person people say, "Goddamn, Libby, I cannot keep up with you." Stop, sit down, sit still. I guess that's my defense mechanism. I never really wanted to stop being that person. I always want to be the 100-miles-an-hour bulldozer that comes flying through and talking about my diabetes. For me at the time it felt like a risk and a reason for people to assume that I needed to slow down.

Craig: The Sugars finally launches. You're righting all these long, dark emo pose.

Libby: Sitting in a dark room with Bonnie the airplane, [laughs] candles lit.

Craig: Your dad's reading it, but eventually other people start reading it. What sort of feedback do you get from them and how do you react to that?

Libby: Oh my gosh. When I realized that people were starting to read this, I felt so strange. It was like, "I've been begging for attention and now that I'm getting it I'm like, 'What?, What are you doing? Why are you reading my posts?'" All of a sudden you felt a little vulnerable, but I had a pretty big emotional struggle with that at first, because people would say, "Thank you for being honest," and I would think, "Am I honest though?" Because this is my outlet, I'm not this honest in real life with people. Only a select few.

Even I would say my best friends from home who've been with me on this ride since the beginning. I don't really talk about my diabetes around them because I don't really to or want to. I felt this pressure to make sure that I was holding myself accountable, that I was acting and speaking the way I was writing. Once I started to have people read these posts, I changed my own behavior. It was like having a reality check, in a way.

Craig: I don't really talk about my type 1 diabetes with people, except other people with type 1 diabetes.

Libby: Right, they're like your people.

Craig: Exactly. I think it's like when you're online and you're putting yourself out there as a blog from a type 1 diabetic about type 1 diabetes. That's your M.O. When you're in person with someone, you don't want to be defined solely by having type 1 diabetes?

Libby: Exactly.

Craig: You make it a smaller part, maybe smaller than it should be. Maybe we should talk about it more in person, but I think there's a real fear of that becoming the only thing people think of us as. We take all that and do all that type 1, like pressure that's building up. We just put it out there online as everything that's us. That's who we are online.

Libby: It's a slippery slope, right? The Internet is so easy to hide behind. It's crazy because I work in social media. I see what goes into content. It's a lot of work to put one freaking Facebook post out there for big brands. As a blogger, whatever you want to call the sugar is now, I look at it as a brand. It's a platform for me to raise awareness and to help other women. I'm afraid of their being burnout about the sugars because I know how common burnout is for me with diabetes as is, as I'm sure you know. It's exhausting and it's repetitive. Literally, same shit different day, every single day. There this such a fear of burnout. I experienced burnout a lot. I have to take breaks from the blog. I take breaks from my Instagram. I have a real job that's very demanding. It's really tempting to play on Instagram with my own stuff all day at work. I have to be really disciplined about compartmentalizing everything.

Craig: Do you think college and young professional women is your demographic, and why is that?

Libby: Yes. Selfishly, like most brands, I created this for myself. A hypothetical other person that is me. It's that mentality of "I experienced such a hole." I was too late in the game to ever identify with JDRF's messaging, for example. I was that awkward in-between age where I was literally just floating through diabetes outer space alone, like, "Anyone? Does anyone get it?" Every bag you give me is so ugly and every conversation I have is so unrealistic."

I knew some other girls in college that had diabetes. They were exactly like me. They just wanted to party with their friends and go to class, unbothered and not really stand out. It was very much a selfish endeavor at first. That was my voice and my design. I have a-- This is going to sound horribly sexist, but I went for more of a girly vibe at first because not only are women in college usually going through a lot to try and find themselves as individuals, and it's a really trying time for a lot of people, but I think right outside of college there's a lot of pressure on us to have our shit together and diabetes set that back on so many levels. [laughs]

It's like, "Oh yes, sure. I'll just move to New York City, get a job, get an apartment, get a new endocrinologist, get all this, like the laundry list of stuff we go through and went to obviously, but I only know what it's like to be a woman going through this. It's like low-hanging fruit, because I know what it's like to go through the emotional roller coaster, to go through the physical roller coaster, to go through expectations and appearance and all that sort of surface levels shit that you want to just feel beautiful. You want to feel powerful. You want to feel independent. Sometimes diabetes is just like, "No."

I think a lot of the organizations that are involved with diabetes in research and support are feeling that same pressure of like, "We have to pivot because it's not just kids and old people." That's what the old stereotype was right? It was like, "Oh, type 2 are people that are overweight or old." People with type 1 are like in third grade and their school nurses take care of them. I feel that social media has helped this such a huge amount, but the misconceptions are still very, very powerful. I think for me, I've always just really resonated with that strong, independent, career-driven woman that doesn't want to be defined by this thing clipped to her bra under her shirt.

Craig: I can say that I have no experience clipping a insulin pump to my bra, so--

Libby: Dude, it is such advantage. We have such an advantage when it comes to--

[laughter]

Libby: My co-worker is diabetic. He came up to me in the kitchen the other day and was like, "Yo, do you ever get your tubing stuck on stuff?" I was like, "Do you know where I put my pump?" [chuckles] I was like, "f I'm getting it stuck to stuff while it's under three layers of clothes, I'm doing something very wrong." It's pretty funny.

Craig: After the break, I asked Libby about how she found the right voice for her blog. She talks about her new movement, Me First.

[music]

This break is a great time for you to read some more of Libby's posts before we get back to her interview. If you're driving or on the subway and don't have internet, let me tell you about another project that I think is pretty cool. If you follow Beta Cell on social media, and if you don't, well, you really should, you'll see that I was just featured in the blog, You're Just My Type.

Laura, who has had type 1 since she was four years old, photographs people with type 1 and ask them about their most embarrassing stories, misconceptions about type 1 they most want to change, and more. Then she posts the whole thing up online. She's looking for more people to photograph in Los Angeles, but you can donate money to help her travel to more places and eventually turn this into a book. To support her visit gofundme.com/yourejustmytype and then find the picture of me on Facebook and like it.

[music]

Craig: On May 12, 2015, you write a blog post called Bottle It Up, which seems to be the point where you decided to shift the sugars away from being emo randy to something different. I read this as you were worried that by not being a good type 1, you were kind of disappointing your parents.

Libby: Yes. I think my whole life I've always been very, very conscious of my parents' perceptions of me, which is really unfair to them because they've never once said like, "If you screw this up, we will be so disappointed, or we are so disappointed." I've never heard that D-word, like the horrible, gut-wrenching D-word. I almost feel like I'm trying to do everything to make sure that I still never hear the D-word.

Until this post and until this conversation that I referenced with my mom, I've never really leaned on my parents for really honest support. I just decided that I can't keep pretending to be fine all the time. It's not a good look on anyone. I have a lot of people in my life that I used to surround myself with, that are very much those people. I used to aspire to be like them because I thought it meant that they were just really strong. What I'm realizing is that it's kind of the opposite.

I think the strongest people that I know are the roughest around the edges because they're super, super honest with themselves and their loved ones and their family members about who they are. I was never like that. I was like, "Yes, I'm good. I'm perfect. I'm fine. I'm golden." Inside, I was screaming because I just wanted to come clean about what I actually needed and wanted.

This post was when I was like, "God, I got to stop being like this fake, one-speed, one-emotion person." I do need to fail every now and then and accept it. You read all these inspirational quotes and you listen to TED talks. You do everything you can to surround yourself with people that tell you that failing is okay. When you actually get to a point where you think you might fail, there's nothing scarier. I think that's what this turning point was, was that I don't need to just go on the Internet and rant and try to be funny and have this dark humor that is relatable. It was more like I need to become actually honest, in a lot of ways, I guess.

Craig: Specifically about type 1 diabetes, or about you in general?

Libby: I think just me in general. I think I used to be such a crowd-pleaser of a person, which was why I was so uncomfortable with having diabetes when I was younger. Even in my family, I only have one sibling and he's very similar. We're kind of- agreeable is not a very nice word, but that's kind of what we always were. We always wanted to be the best-behaved kids or the cousins that everyone got excited to hang out with. We tried to be easy on everybody.

I think that last year when I wrote this post, that was a huge turning point for me just as a person. This is when I put my foot down. It was like, "I'm not going to be a phony person that acts like I have everything figured out. I'm not going to write these four-hour-long posts telling people that I overcame these massive panic attacks and that I'm fine now." Because no one's fine. It truly was a "I don't want to disappoint my parents, but I also don't want to hide bumps from them." I don't want to tell them that my life is perfect and that I'm having a great day every day or that I'm super responsible about everything.

I think admitting, "You know what? I miss my six-month checkup with my endo," and telling my parents that instead of saying, "Yes, I'm good. I'm going. I have an appointment in the books." I'm dodging the truth out of the fear that they'd be mad. I think I was just only really screwing myself over with acting like that.

Craig: How did The Sugars change after this?

Libby: I just lightened up a little bit, tried to get a little bit deeper into my sense of humor and share that side of me. I found that it was much more fun to write. If I'm not just going on an emotional rant to the Internet, sometimes I would get so deep in those posts that I was like, "This is miserable. Why am I doing this? This is ridiculous." I realized people are listening. People were engaging with me. They were giving me such positive feedback.

Libby: They were saying that they were inspired by what I was doing, what my attitude was and what my approach was. Instead of being this pressure to be somebody who I'm not, it was almost like encouragement to just keep going and to keep trying to use this as a positive platform where people can come and laugh their ass their off or just know that they're not alone. Literally, instead of saying "my," I would say "our." I would make this about us as a team, as a drive, as a family. That was when I really started to feel really proud of the stuff that I was putting out there. I think that that was because I knew that it was no longer about me. It was about the people that were writing me and emailing me and commenting.

Craig: Which is an interesting segue to your post in March of 2016. Where do you start this #MeFirst campaign, which in a way is very much about-

Libby: Me. [laughs]

Craig: -yes, but also about us.

Libby: Yes. Me First is something that I think I came up with super, super randomly. I really realized that I had built a little bit of a community and I have to give a big shout-out to Instagram for that. This blog became much easier to manage when Instagram became a big focus for me because I was able to show quick real-time content without the pressure of writing a really long post. You get much more immediate feedback from people on Instagram.

What I was really fueled by was the comments people were leaving. I was blown away. I would have a post with 12 likes, but 21 comments. I was like, "Who the hell are all these people?" They were all making comments of how they also were experiencing the things that I was experiencing. There are so many people out there like me that I'm now really starting to feel connected to because of these Instagram posts. I forget the defining moment where I thought Me First was really it. I think it was right after I got my CGM. For the first time, I had a Dexcom stuck on me. Of course, I remember that first night I do what I always do when I'm upset, I go in the kitchen and I fake wash a plate.

[laughter]

Libby: That was very weird. Now when I'm upset, I'm like, "I'm going to go in here and turn the water on." I had my little cry about embracing this new thing on my body. I felt ugly. I felt compromised. I felt vulnerable. That moment I won't forget where I was like, "I have to just accept this. It's better for me. This is a huge investment in my long-term health. I will get over this eventually. Today is going to be the hardest part."

Craig: Was the issue just having a physical CGM on you, even though you already wore a pump, or was it the information that you are now being inundated with?

Libby: Oh man, it was definitely both. I think that I was surprised at how much it hurt. I was really surprised how much it hurt to put my Dexcom on. That really pissed me off. So I said, "God damn it, every week I'm going to have to feel this."

Craig: I dread it every week.

Libby: It's awful. My hands shake. I started sweating.

Craig: It takes me a good 10 minutes to get the courage up to put it in.

Libby: It's awful. Everyone is, "It's like you're ripping off a band-aid." You're like, "You try it." This is not a band-aid. If this is a little band-aid, it'd feel like we would all bled out by now because this sucks.

[laughter]

Libby: Yes, it was a moment I was surrendering more of my brainpower to another thing. I really struggled with it at first. I was obsessive. I was over-correcting a lot. I was getting very, very, very frustrated. That was when I had my little moment of like, "You know what? No, I'm not going to give into this little piece of you know what. I'm going to invite him in, I'm going to let him be a part of my world, but I am not going to surrender all of my attention and my energy to this tiny little device."

That was when I was scrolling through my phone and I found this photo of myself from a couple of years ago when I was visiting a friend in New York. It's like the happiest picture of all time. I've used it as my profile picture for so many things, because I'm like, "I look so happy." I realized that that's how people see me.

Craig: Can you describe that photo for me?

Libby: I'm sitting on a roof deck patio thing in Manhattan and the American flag behind me. It was Memorial Day weekend. I'm holding a beer. I have the biggest smile on my face. I just remember this day being so carefree. This photo always reminds me of that feeling. When I look at it, I'm like, "How do we get back to that place?" This Dexcom thing was really bringing me down. It was putting me in a really dark place where I was just like, "I can't deal with this. I can't handle this pressure. I don't know how people do it."

It took a very strict exercise of me reminding myself that I am still myself. I can take it off if I want. When I got 33 shockingly amazing comments on this bad boy, I woke up in the morning and I had all these Instagram notifications, and I was like, "Who are you, people?" It was like, all these people just saying, "Yes, I see. I feel the same way. This is amazing." Then I clicked on the hashtag and saw that three other girls had already replicated it. I was just like-- I teared up. I immediately was like, "Oh, my God, this is so cool. This is real. People are into this. This makes people feel good." I think that that was when I was like, this Me First thing is way more powerful than I realized.

Craig: I'm just going to read the end of your most recent post. This is a homework assignment where you're telling other people to use the #MeFirst at the end of all their posts. You say, "We're going to start an unapologetic movement, amigos. Diabetes can keep us from being who we are put on this earth to be or how we live our truth. Yes, of course we need to take care of ourselves and our diabetes, but be sure as hell it isn't going to stop us from getting there and doing the damn thing." Is that what you want The Sugars to be?

Libby: Yes, it is. It's funny because this post took me the least amount of time to write because it was the least manufactured. It was so honest. When I go on Instagram and I see someone bitching about-- This is going to make me sound really mean. When people bitch about being 180 and how they're so frustrated, I'm like, "Just go have fun." It's almost one of those things where I- and not to knock anyone that is very disciplined because damn it if I could be that disciplined, I would be. What I mean is I wish that people would just put their happiness holistically before their obsession with a perfect 91 blood sugar. Because that's just life, nothing is ever going to be perfect.

To be honest, if I wanted to have a flatline all day, I wouldn't leave the house and I would drink water. That's it. That's miserable to me and I personally need to work much harder on discipline and saying no to stuff sometimes. I have a lot of fun. I enjoy my life. I take very good care of myself. Life is way too short to be obsessed with that one perfect number. The platform that I'm on and the message that I want other people to feel is empowered to invite diabetes in, make a little room for it at the dinner table and just accept it. Don't fight it, because that will never go well. Make room for it as an accessory to who you already are and what you're already doing.

I'm never going to say no to going to a friend's birthday, because I know that there's going to be pizza and beer there. I'm never going to not go for a bike ride because I'm scared that I'm going to go low during the ride, and it will be really embarrassing around my friends. Do I have a constant, constant internal struggle and fear of things going wrong all the time? Absolutely. Because I have that, I think that that's the reason why I'm able to strike this balance between business and pleasure, if you will.

I think that's what MeFirst is about. It's truly just going after whatever makes you actually happy at your core. Because, what's the point otherwise? If you didn't have diabetes, you would do it. Just because you have diabetes doesn't mean you should not. It just means you have to make room for it.

Craig: Don't let diabetes hold you back.

Libby: Yes. You know what? It is going to hold you back. There are going to be times when you can't do what other people are doing, like snorkeling and scuba diving. Those are very complicated things, but I think it's more about a mental commitment to yourself, to not go, "Oh, well, what was my blood sugar this morning?" To have that not be your first thought. To have your first thought be, "I'm really stoked about this Saturday because I have time. I want to go to the farmers' market. I want to go for a walk. I want to go meet my friend's new puppy and go to brunch." Not, "Do I have enough?" To have all these hesitations.

It's like meditation. You have to train your thought process to put your goals and your aspirations and your plans first, and your fears about having a blood sugar spike or having a blood sugar drop. Just be prepared for those things, so that they don't have to be top of mind all the time.

Craig: How would you define success with The Sugars?

Libby: The other day after work I was walking to a yoga class and browsing through my Instagram and realized I had a direct message. I was like, "People do that? This must be spam." I looked and I realized I had 12 unread messages from all these people on Instagram that had reached out to me. I started reading through them. I was like, "Oh my God." People were pouring their hearts out.

One girl said that I was her hero because her sister has type 1 and refuses to listen to anyone or look at anything other than my Instagram account. I burst into tears because I was like, "Oh my God. Well, that's a lot of-- That's wow." Thank you, I guess.

Craig: It's a lot of responsibility.

Libby: Yes, I sort of felt this is responsibility. At the same time, it was so humbling. I was just like, "Oh my God, I hope that I've been saying the right things. I hope I haven't encouraged anyone to do anything that they shouldn't be doing for themselves." Even if it's someone texting me up, sending me a message saying, "I feel like shit. I've had the flu. I'm hungover. I can't get my blood sugar down. I just read your post and it cracked me up, thank you."

That for me is amazing because it just means that other people who agree with the concept of life first, goals first, dreams first, diabetes second, that's a cool feeling. I truly want to make a difference because I had such a lack of support when I was 18, 19, 20 through now I'm almost 28. I would love to be that shoulder for someone else to cry on. I think that that's really how I'm measuring success is that people are leaning on me and they've never even met me.

[music]

Craig: Beta Cell is produced, recorded and edited by me, Craig Stubing. Our theme music is by Purple Glitter. You can find Beta Cell on Twitter, Facebook and now Instagram @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, if you like Beta Cell. If you don't, I'm not sure why you're listening this long.

Please leave a review to help other people find the show. Libby is on Instagram, Facebook and Twitter @ihavethesugars and her blog is ihavethesugars.com. Don't forget to tag your photos with #MeFirst to join her movement.

I'm Craig Stubing and this is Beta Cell.