Beta Cell #016: Jasmine Fouts Transcript

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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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When we talk about the burden of type 1 diabetes, we're usually talking about the burden on people with type 1. How hard it is to manage blood sugars when exercising, trying to count carbs when you're at a restaurant, CGMs waking you up in the middle of the night. All the crap you have to carry around all the time. Type 1 doesn't just affect the people who have it; it affects everyone around them. Friends, family, coworkers, significant others. The people you're rude to when your blood sugar's high and everything pisses you off. When you're on a run with your friends, if you go low, they have to stop for you. When your CGM goes off in the middle of the night, it wakes your partner up too. Maybe you make your sister carry your glucose monitor in her purse, so you don't have to. I'm guilty of that one. Sorry, sis.

When we do that it feels like we're putting a burden on them, that we're making their lives harder in some traumatic way. I'm willing to bet that they don't think about it nearly as much as we do. The burden we place on them, it's made up. It's no big deal. They're probably happy to be able to help us because there are so many parts of type 1 that they see us dealing with that they can't help with. When we worry about it, we're just making an emotional burden that we're adding onto our own physical burden with type 1.

Jasmine, who was diagnosed with type 1 at nine years old, has been dealing with this fear of being a burden for a while. When you were a kid, why did you pretend you didn't have type 1?

Jasmine: I did not want to be different. I didn't want people worried about me, that was the big thing. I have three sisters, and I'm the third of four girls. I'm the only one in my entire family who has any kind of diabetes. The only one who has any kind of illness. Nobody even has high blood pressure or anything. When I was diagnosed, I went into a coma. I was sick for a really long time. I hated that feeling of being the person that my family was scared for. I tried to just act like it wasn't happening. I couldn't with my family, but with the world. With my schoolmates and everybody else. I just tried to pretend like-- If they asked me, I'd tell them that I had it, but I never talked about it or did my blood sugar or an insulin shot in front of anyone until I was in college.

Craig: When you were hiding it, was that affecting how you managed it?

Jasmine: Oh, yes. I didn't do my blood sugars, or I skipped my insulin shots. I mean, stuff that I'm horrified by now that I wouldn't do. At the time, I skated by somehow. I just ran really high all the time, and I wasn't extremely symptomatic.

Craig: You just got used to being really high?

Jasmine: I was pretty much always in the 300's or something.

Craig: Do you think that you weren't taking care of it because you were trying to hide it, or were you just burned out on having diabetes?

Jasmine: Yes. I was burned out. I was scared. I felt hopeless about it.

Craig: What did you feel scared about?

Jasmine: At the time I was scared of low blood sugars, and I was scared of the long term complications. I felt those looming over me pretty extremely, probably in a way that I definitely didn't need to. At the time, it felt like I'm waiting to be blind, basically or something bad to happen.

Craig: Every time I go to the eye doctor, every year, they say, "Your eyes look good but here's four packets on diabetes retinopathy" and how if you don't keep control you're going to go blind.

Jasmine: Right, everybody has to figure out their way of dealing with it. I think part of my way of dealing with it was basically, "Screw this, I'm going to do whatever I want because I don't have that right now. I can totally see right now. None of this is happening to me at the moment, but who knows when it will? I'm just going to do whatever I want. I'm not going to be different. I'm going to the same as everybody else".

Craig: Do you think it felt like the complications were going to be inevitable so you might as well just live life now?

Jasmine: Yes. In a lot of ways it did. I think a lot of that is that adolescence-- I had that feeling like I was never going to die, or like I was going to go out in a fiery crash at 18 or 21. Just live a wild life before that. The consequences are more real now. Then it was like, "I could hardly imagine it". Living to an older age with this disease felt like something I just couldn't imagine.

Craig: Is there a point where you decided I can't keep doing this?

Jasmine: I was in college, and I found out about getting an insulin pump. I'm sure I had been skipping my appointments and just eventually had to go in order to get prescriptions or something. Found about an insulin pump, and I had to do three months of preparation in order to qualify to get an insulin pump because they had to be sure that I could be trusted with it. I had to write down everything I ate. I had to really be super on top of my blood sugars because I wanted that insulin pump. I did all of that, and I just ended up investing in myself in a way that stuck.

Craig: Why did you want the insulin pump if you were used to hiding it for so long? I mean, I know what kept me from getting an insulin pump for a long time is how I felt that would be so obvious to everyone that I had it and it would be impossible to hide.

Jasmine: College, for me, was this awakening time. I went to an amazing school, met amazing people. Great friends, I still have to this day. I think the core of me formed in college. I definitely gained self-confidence and a lot of self-love. I think that desire to hide receded. I wasn't really thinking about, "Am I the same, or am I different?" I was thinking, "I am different, and that's great". I also wanted to get the pump because I thought it was cool. I was like, "Wow. You could do that instead of the shots. That seems easier". Also, to just inject something once every three days, that's revolutionary.

Craig: When you were not taking care of yourself, did your family know?

Jasmine: My family knew, but I really shut them out. I had a lot of shame about not being perfect and not having good blood sugars. To me, they were good or bad, and mine were always bad. I felt I was a bad person. My dad still jokes about this. I would lie. I would just write down different blood sugars, and go to the doctor. They'd be like, "Well, your A1C clearly states that these blood sugars are not accurate". I didn't want to talk about it with them because I just felt guilty and ashamed. Felt like it was a burden, I didn't want to bother them with it.

Craig: Do you think that you not taking care of yourself added an emotional burden onto them that wouldn't have been there if you were taking care of yourself?

Jasmine: Yes. That's a good question, Craig [laughs]. I'm sure that you're right. I'm sure that it did, yes. Now that I'm on a path where I am taking good care of myself, I'm starting to reach out to them and try to share with them, "Hey, look. Here's my A1C. Hey, if you want to follow my blood sugars you can because they're pretty good". They're all very supportive. The way that it was when I got diagnosed, I didn't ever hear the message of, "It's okay to not be perfect. It's okay to have high blood sugars. That's going to happen". I didn't hear about everything impacts this. Hormones, and stress, and how much you exercise. The message I heard was like, "Eat the right thing, you'll have the right blood sugar." That's it. If I didn't have a good blood sugar it was like, "Well, what did you do?" It was A + B = C.

Craig: It was like the blame game.

Jasmine: Yes, man. It absolutely felt like that. Looking back, that may not be the accurate truth. Everybody remembers things differently. To me, I felt very blamed for sure. I knew that contributed to me kind of putting it away because it was like, "I just don't want to have to deal with people". I still get super sensitive

like when I check my blood sugar, I sometimes still cover the result. I don't like someone coming up behind me, even though I know it's going to be good, these days, it just feels very private. If people ask me about it that are not diabetic, I would just want to be like, "What's your cholesterol, what's your other private lab result that you probably wouldn't broadcast. I don't know it just feels--

Craig: It feels like a judgment.

Jasmine: It does feel like judgment and it doesn't need to. That's why I love hearing about parents. This past, it was either March or May, I went to a JDRF convention. I saw these little kiddos, like four and five years old, running around with their Omnipod on and their parents are so engaged and invested. It just feels like a new scene than the one I was diagnosed in. I'm so glad for them.

Craig: How is your relationship with your family change now that you're more open about your diabetes?

Jasmine: My relationship with my family is always evolving and it's been getting better and better and better, and that's why I'm now open about my diabetes with them because we've worked on building trust and we've worked on being closer. They happened at the same time. Honestly, for me, distance helps a lot. When you're right next to someone-- When I was there, I felt overwhelmed and I was going to disappoint them and they were judging me and that sort of thing, but with some distance, I've been able to just get firm in who I'm. If I do feel judged I can understand that's probably not what they intend. They love me, they care about me, they want me to be healthy and happy.

I can hear that now, I don't think they would ever say it to me now just because I'm older or because I told them to stay back for so long. They definitely are way more involved in my life in many ways and I'm so happy about that.

Craig: Do you think before it was an issue of interpretation that they would say something and mean it in a good way or a loving way but you would interpret it as judgment, and that would cause you to react negatively?

Jasmine: I think that was true and I also think that there was just limited language like we talked about before. There was just not a whole lot of information out there about all of the ways that diabetes can play out and all of the ways that life affects your blood sugar no matter what you do. You're always going to have an unexpected number at some point and have to try to figure out what to do about it. That doesn't mean you're a good person or a bad person, it just means you have diabetes. I send my dad snapshots of my Dexcom average, the two-week average that you can get. Just so he knows where I'm at and to me that makes me feel that I'm easing some worry he might have.

Craig: Is that more for him or is it more for you?

Jasmine: It's both. I know he likes to know that I'm doing okay and to see a number that proves it.

Craig: That you can't lie about?

Jasmine: Yes because I lied so much when I was a kid about it. I do that. It might be a nod to that too because he still makes fun of me like, "Here's this thing," but it's also for me because I want to share it now.

Craig: Do you feel you're building back that trust you might have lost as a kid?

Jasmine: We have more trust now than we ever did. I think that a part of it is because I'm more open.

Craig: Does your fear of being a burden ever prevent you from seeking out help when you need it?

Jasmine: Not professional help, but sometimes I will scale back on describing how I'm feeling. For example, this depression that I am in now, I just didn't even want people asking me just like, "How are you? I didn't want to say, "Not good," [laughs] because I'd already said it a few times because I've been not good for a little while.

Craig: You didn't want to lie?

Jasmine: Yes, I didn't want to lie or tell the truth either. I just didn't want to say it again. They want to know the truth, they want to know how I'm doing; that's why they're asking but I didn't want to say again, "Well, it was hard to get out of bed and I've been crying a lot," all the details of it. It's like I would rather them ask me what I had for breakfast or something like that, that I could answer and not worry that it makes them worry.

Craig: Were you afraid of their judgment or feeling shamed?

Jasmine: No, not with my friends, definitely not.

Craig: It was more you not wanting to place your burden onto them?

Jasmine: Yes, you're drawing quite a link here, that's a good connection that I haven't made, yes, absolutely. I don't want to say it's rare but it's not common. Most of the time if I'm feeling depressed, I'll just say so. The people around me are wonderful and they don't make me feel I have to be happy or that it's not okay. They ask, "What do you need?" If I say, "I just want to talk about the Kardashians," then they're like, "Great," [chuckling]. I mean certain friends some can't stand the Kardashians but you know who those friends are so you don't ask them.

Craig: I've experienced a similar thing where diabetes feels like, "It's our own cross to bear," and you don't want to weigh other people down with that because you don't want to take away from their happiness or whatever they're doing in their life. At the same time, it's so much easier to carry when you have a lot of people carrying it. You got to find enough people that they'll help you carry it and you can help carry something for them. You're carrying the same weight but it's not all yours, you're spreading it out through over a bunch of people. You're helping other people carry a lot of things too.

Jasmine: Yes, at these conventions, teenagers with their parents and they were so involved in each other's lives and they were clearly supportive. I definitely found myself being a little bit jealous but also just happy for them. I think some people's families are their best friends. I have a family that I'm getting closer and closer to and that I love so much, but definitely the people that I lean on most are my friends or what I would call my chosen family.

Craig: Do you still feel a burden to your friends and family?

Jasmine: No. My family maybe. I think that your question was so spot-on about not taking care of myself and that being more of a burden to them, I think there's some residual stuff about that, but in terms of them being worried but also like I said I'm the only one in my family who's "sick". If they're going to worry about someone--

Craig: It's going to be you.

Jasmine: Yes probably, but I also get the sense from my family that they know I'm okay, and I don't feel like a burden at all.

Craig: When did that change?

Jasmine: What's funny is that I may never have actually been sure that I was a burden. It was more just the fear of it.

Craig: Is there any part of you that's grateful for type 1 diabetes?

Jasmine: I wish you could hear me roll my eyes [laughs]. I love that question and I hate that question because I'm going to say yes and that's the answer, but I also just--

Craig: It's okay if it's not the answer.

Jasmine: It is though, but that's why I'm rolling my eyes because I'm like, "How is that possible?" I think the reason I'm grateful for it is because it's a part of who I'm, and I'm grateful to be who I'm. I feel good about that. I wouldn't be fairly optimistic strong person the way that I am without this, and I know that. That's what makes me roll my eyes because I'm like, “I got to do all this stuff to reap that benefit.” I know that I have a perspective that is unique, and I know that I value my days in a certain way because of this disease, and so I am grateful for it.

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Craig: Beta Cell is produced, recorded and edited by me, Craig Stubing. Our theme music is by Purple Glitter. Be sure to subscribe to Beta Cell on iTunes, Stitcher, Google Play Music, the NPR One app, Radio Public. We're even now on Spotify to get new episodes delivered automatically to you. We're launching a new show, Out Of Range. Me and Laura from You're Just My Type, are going to meet every week or two and talk. Those episodes will show up in this feed, so subscribe now if you haven't already.

I'm Craig Stubing and this is Beta Cell.