Hi, Amanda, Welcome to the dialogues.
Hi, thank you for having me.
Since I have started this dialogue series, I keep on meeting such amazing people who have ended up working in the world because of a diagnosis of type 1 diabetes that they have and certainly something that I’ve done, and it’s great to connect with people doing that. I think it’s sort of another way to put this, but it’s a little bit like making lemonade out of lemons.
Yeah, exactly. I was a senior in high school when I was diagnosed with type 1 just three months before I was set to graduate. So that changed plans a lot. I was applying everywhere for school as a general bio major. Always loved science which was something I was super interested in. I didn’t know if I wanted to do nursing or PA whatever avenue I wanted to go in. I wasn’t too sure just yet. And then I got this diagnosis and then my parents also got a divorce. It kind of just threw a wrench to all my plans. So I was just like, well, I’m now in this new financial situation that I didn’t see myself in college as it was super expensive that I had no idea about. And then I was trying to navigate this new chronic condition. So, when I was diagnosed, my parents sat down and we were like, you know, the best thing for me right now is to stay home, and I ended up going to community college, and it was like, the best thing to ever happen to me.
I was probably kicking and screaming the entire time, because I worked really hard in school, always, kind of, saw myself going to a big named university and you know, where all my friends were going and I went to community college and now I’m like, community college was the best thing. I saved so much money in my student loans. I got really great attention for all my science classes and the community college I went to was like, one of the only ones in the state of New Jersey that had a nutritional science major. Had I not done any of this stuff, I never would have found a nutrition major, probably wouldn’t even be in, like, this realm of work that I am in now. So, sometimes I believe the universe works in very mysterious ways, and we don’t know what that plan is until everything kind of just starts unfolding, and we look back and see that later on.
That is really serendipitous. Do you remember what it felt like? like what the experience was, like during the period when you found out about the diagnosis, and then just, kind of how you managed it mentally, what was happening for you?
There was a lot going on at that time in my life. I was taking college level classes in my high school year, so I thought I was just stressed out. I thought all of my symptoms were related to me, studying for, like, my exams and college applications. So, I was not properly sleeping, had constant headaches, all of the symptoms I thought were stress-related. And ultimately, once I was diagnosed, my care team didn’t even know whether or not to treat me as a kid or as an adult because I literally turned 18 two weeks earlier. So I sat in the ER for about 12 hours, I was there all day long, and they were pretty much arguing like, adult endocrinology and pediatric endocrinology about who was going to take care of me. Eventually, I ended up getting admitted into a pediatric floor, but was seen by adult endocrinology and I’m I never want to say, like, there’s a good time to have a diagnosis of diabetes, but I’m thankful that I got to take all of the weight of it because my parents were a mess.
My mom was crying, she was blaming herself, like, she was shaking her hand, trying to give me an injection and I was just like, just let me do it. And that’s what I did. I just kind of dove right in and just started doing it. I didn’t know what I was doing. But I just felt like it was something that I needed to do and not let my parents carry that burden for me. I really feel for parents actually.
I do feel like it must be even more challenging to be a parent. And I think your parents are probably lucky because you got the diagnosis 10 years early, which is common, right? Like for eight year olds, your parents have to manage their kids almost worse than actually being the kid with the condition.
I give so much credit to families, parents, caregivers, anyone involved because they’re an extension of us. They’re the ones that keep on checking the dexcom just as much as we are. So I definitely give them a lot of credit for all that they do for us totally.
So you took responsibility for managing it yourself as an 18 year old. Did it impact your life in any ways in terms of socially or mentally or Do you remember like were there any changes for you? I mean for me I was 30 when I got diagnosed and I pretty much just got on with it. Like I didn’t really think about it too much. I mean obviously that you’re trying to avoid hypos but other than that, I didn’t kind of have too much impact socially or mentally at the time. Did you remember this?
Yeah. So I never cared about nutrition ever. I have like the typical teenager type of diet where I was eating fast food. I always give my clients my example. In my high school I used to have a bagel sale every morning and I would always buy two bagels every morning because it was like $2 and then I would grab a handful of the little butter packets. So I would eat two bagels and probably like a stick of butter every day and then I would go home and eat whatever my mom was cooking. So you know, I don’t really care what I’m eating now, like, oh my God, I actually have to know what a carb is and you know how to count them and measure things and it was overwhelming to say the least.
I know my mom felt overwhelmed. I think one of the first food she made was like a red sauce and she’s like counting up all the carbs like the tomatoes, the tomato paste, the onion, the garlic, and she gets like some crazy number for like a big pot of sauce? And she goes, I think this whole thing has like 1000 g of carbs. And I was just like, so how much is like a cup? And she was like, I don’t know how many cups are in this whole pot. So I’m like, well I’m not dozing for like 1000 g of carbs. So, we both were trying to put the pieces together as we went and the more and more I met actually with my care team, their advice, you know, starts out very innocently okay 30-40 g of carbs for breakfast, 60 g of carbs for lunch and dinner. You know, make sure it has the protein.
I started becoming obsessed. Like, I’m a people pleaser. I love for everyone to be happy. And I never want to make things complicated for anyone. I never want to be like a hassle or anything. So I would take everything that my educator, a dietician said, I would take it literally like, she goes, okay, you have to have an egg for breakfast. I would literally have an egg for breakfast. I would like not eat anything that they said I could or couldn’t eat. And it just kind of morphed into something a lot bigger without me really realizing what was happening at the time.
So you became compliant? But like overly compliant, excessively compliant. Would you say that?
Yeah like my behaviors were commended because I was meeting all of my thresholds. Like I was meeting my A1C. They loved the way my blood sugars looked, but my mentality wasn’t there. I was doing it because I didn’t think I could, you know, eat anything else. I thought that this was good. So I’m going to continue down this road because it’s making everyone on my care team happy for me. But on the inside I was completely and utterly miserable.
Yeah. When did you realize that excessive compliance was making you miserable? How long did it take you to get that light bulb to go on for years?
It wasn’t until I graduated college that I realized something was wrong. There’s a family style Portuguese restaurant like we always go to whenever there is any celebration. And I went to this restaurant for my graduation dinner. it’s family style so you go there and you get food for a couple of meals and I wasn’t eating anything other than grilled chicken, broccoli, almonds, baby apples. I wouldn’t allow myself to have big apples because they had too many carbs and so we go to this restaurant that they’re known for like their garlic chicken and they serve it with a big plate of rice and veggies and delicious Portuguese bread that you dip in the sauce. So, I just went to town and I ate all of it and the plate was made for at least four people and I ate it all myself.
That was not like the first occurrence of me doing an overeating cycle from like restricting. But I remember my sister looked at me and she was just like, are you okay? And I feel like she meant it like you’re gross. But for me, I was just like I don’t think I am okay, like what I just did or what I’m doing isn’t normal. It’s not healthy yet. It was just a very weird moment that I kind of came to a realization of what I was down that path and I was just like something has got to change because this doesn’t feel good anymore.
It’s interesting. I mean, I think about my week to week, like I’m trying to be pretty good all the time, right? But like generally Monday, Tuesday, Wednesday, and Thursday, I’m particularly good. And then Friday comes and I go to have this sandwich for lunch, Saturday morning comes and I think okay, I’ve been good all week, now I’m going to have this bacon sandwich for breakfast on a Saturday morning treat. So it’s not unusual right for us and all this is kind of the mental process to managing health and diet and lifestyle in general, right? And trying to find balance which is, you know, be good to one point and then be bad or indulged to another point. So it sounds like you’re experiencing an extreme of the thing that we all do right in regards to managing it, but also try and enjoy the things we enjoy and try to, you know, not get too out of control. It sounds like we’re too controlled here and then when you decide to lose control, you just let yourself really go.
Yeah, I was really stuck in the “all or nothing” mentality. I had a really difficult time like loosening the reins a little bit like if I went to dinner with a friend, I would freak out if I they didn’t have the salad that I wanted because they were all out like my go to is always like a grilled chicken salad that I would spend $20 on and not even the dish that I actually wanted because I was afraid to eat the food.
So it sounds like when you dig down into it, it really does end up having not just to manage your diet and lifestyle. It really does end up being about a mentality and about and in some senses about a personality type and you would have different types of people. So you’ve got those types of people for example who don’t drink any alcohol, but then we’ll binge and kind of blackout. Then you’ve got those people who do drink a little bit of alcohol and are kind of able to manage, and you know that it’s all really interesting. Do you see this going to play out in your work as a dietitian?
Definitely. Yeah, especially once you add a layer of diabetes when we have to hyper focus on what we’re eating because that’s how we calculate our medications. It is through counting carbs. So it’s not like we can’t just avoid them altogether. We do have to kind of hyper focus on what we’re eating. And you know, it can start out very innocently as, okay, I’m not going to eat the top bun on my burger because I want to, you know, cut back a little bit on the carbs instead of our mentality being, I want to take that top bun off the burger because you know, if I eat that top bun, it’s gonna be way too much food and I’d rather eat the french fries instead. It’s our mindset, it’s our mentality and it’s always about the carbs, It’s about the insulin. There’s only so many things with diabetes that we can control. And I feel like when some people with diabetes have a certain type of personality, like you alluded to, it becomes about trying to control a disease that really can’t be controlled to a point that we really wanted to be.
Well, there’s no perfection.
This is hard for people to accept.
Well, it is. I mean, it’s not hard for me. I probably should try and get a little bit closer to thinking about perfection. I tend to be a bit more up and down in terms of how much focus I have on it. And I don’t count carbs. You know, I will just look at dinner and I’ll go, what does it look like? And what do I predict is the insulin dose that I need to take? And that’s pretty inexact science, but it kind of works for me. I mean, occasionally I look at, you know, if I’m comparing foods in the supermarket, I’ll look at the back like the other day, I was looking at some wraps and there was a whole difference, like a range of different types of wraps? And I was like, okay, which ones? There was spelt and there was a whole meal and there was, you know, all this range of these mountain bread wraps and I was like, well they all kind of the same, I’ll just go for the one that’s got the lower carb. So I was in the back looking at the carbs. It’s rare that I do that though. When you’re coaching people around diet, how do you coach them on these types of topics?
It’s all very individual because it comes down to a lot of, you know, what has their experience been with dieting in the past? Have they been someone who’s a chronic dieter where they’ve been on all these fad diets almost like a weight watcher like Jenny Craig, or whatever it is. So they always just wanted someone to tell them exactly what to do, like tell me to eat this for breakfast, this for lunch, this for dinner. Then they get thrown into this diagnosis of diabetes and they want that same thing, tell me to eat this this and that and I’m going to have this and that type of result forever. And so it’s hard to have them break down, you know, what are their actual preferences? What are their values around food? What experiences are valuable to them, What’s their reasoning behind wanting to improve their relationship, depending on how they answer those questions kind of dictates where we kind of manoeuvre throughout the coaching program.
Do people tend to fall predominantly into certain types like being more pedantic and wanting to be very structured and told what they should be eating all the time. Is that more common or is it the people like me who just do whatever they want to figure out their insulin dose and try not to get too weighed down by it.
Yeah, there’s always going to be the extremes in diabetes. There’s going to be ones that just kind of put it on the back burner, just kind of let it be there and they’re gonna put their lives first and then there’s going to be some kind of people whose whole life just revolves around their diabetes management and either or in extreme cases, it can impact our relationship with food. But what I typically see that things come down to in terms of what really impacts someone’s relationship with food and even their diagnosis is when they’re really stuck in this perfectionism mentality. It usually has something to do with their relationship to their insulin blood sugars, diabetes, that’s usually like one category, they’re obsessed to. You know, checking their blood sugar, looking at their dexcom, not taking more than X amount of units of insulin. If they see an arrow on a certain number, they just can’t handle it and they just start spiraling out of control.
Another area is exercise. A lot of people use exercise as a way to manipulate their blood sugars. And the other thing is food. Those are really the insulin, exercise, and food. Those are like the three things that we can really put on quote “Control with diabetes”. So then some people take it to extreme form.
What are the types of steps that you’re taking with someone who is overly or unnecessarily pedantic?
It’s a lot of mindset work. It’s a lot of meeting them with the facts. So if for example someone is restricting some sort of food or let’s say bread as it is very common. So they’re telling me that what they’re eating right now, like little to no carbs. So if they’re eating little to no carbs. I asked them why it’s important that they want to eat more carbs. A lot of times, like figuring out what their “Big Why” is a really big motivator for them. So a lot of times it might be like their family motivators. As if, I want to be able to go out to dinner with my husband and you know, not start crying at the dinner table because there’s nothing for me to eat or I want to be able to go to a wedding, a birthday party, happy hour with my friends and you know, not order the grilled chicken salad like I would, so they want to be able to enjoy food and travel and do all those things.
What we do especially with food is that I ask them to make a list of foods that give them the most amount of anxiety and foods that give them the least amount of anxiety. So what we do once they have that list then I have them rank it from least to most and why is that food gives you such an emotional response?Like mangoes freaking you out a lot of time. Or you may think it has too many carbs, so I can’t eat that. So then in the next column, we write out what we can do to ease our way in. So if mangoes are really scaring you, we can talk about, okay, instead of eating like a whole mango, can we try a quarter mango? Can we pair it with some other foods to help slow down that rise that might happen if you were to eat a mango by itself? So we talk a lot about different strategies that we can use. Then we also talk about different dosing strategies, food pairing and all that stuff. So they learned how insulin actually works, how digestion actually works. And then we’re able to look at things through an experimental lens like I got this response and that was bad. So I am never doing it again.
I find that making the list of foods is really eye opening because for most of the time all those foods have the same exact reason why we’re avoiding it. And I think it’s really eye opening for clients to see like you can easily think of at least 20 or 30 front backs of all the foods that were mentally restricting without us really even thinking about it.
So that’s really interesting. And when the individuals are first starting out with you, they are coming with a really broad range of different reasons. Is it weight loss? Are they kind of showing signs of ill health in some way? Is that generally the type of individuals that are approaching you initially?
So I try to make it quite apparent that I don’t practice from a weight centric standpoint. With that means I practice from a weight neutral standpoint. So I don’t even ask any of my clients what their current weight is because honestly I don’t care. That is not going to be the outcome of our time together. So we focus about how and why they’re making certain food choices and how and why they’re getting stuck in certain areas of their management rather than, you know, we could do all these health promoting things right, we could be sleeping better, eating better, exercising more consistently and then we step on the scale, we don’t get the result that we want. And then we go back to, okay, well what can I control; insulin exercise and food. So instead of the scale being the dictator of success, we work about, you know, how their energy levels are. How energized are they feeling during the day, How are they feeling overall in their management? So yeah, we don’t focus on weight.
I do have people that come to me for weight loss, but I let them know that it won’t be an outcome, that I can’t guarantee that you’re going to lose 10 lbs. It could definitely be, but it’s not something that I focus on. I’m not going to have them weighing themselves weekly. And a lot of my clients have gone through some type of traumatic experience with weight. A lot of them have experienced weight stigma, especially in the diabetes community. I’ve had a handful of clients who have been misdiagnosed for type two because they have met certain BMI criteria and they were misdiagnosed for six months, some of them two years, one, even for 10 years. It is incredibly scary and it makes it really hard for them to trust their health care professionals, to trust themselves that their body has betrayed them. So it’s a lot of healing in ways that just don’t revolve around the scale.
And I imagine by the time they’re getting to you or the fact that they’ve even reached out to a dietician is in itself a massive step right? There’s some motivation there to actually make a change which I imagine is in itself a very helpful part of the process.
Yeah, I hear a lot from people that it’s almost like a breath of fresh air because I’m not like the dietician at their clinic, I’m not there to tell them to eat this or that type of thing. I’m there to meet them kind of where they’re at and I want them to feel empowered whether they’re wanting to eat a salad or a pizza. I want to teach them how to do that and why to do that and really change their whole outlook and mentality on both the relationship with their diagnosis and with their food.
So where did this style come from?
So I’ve been a dietitian for five years now. They went by so quickly, but a lot of it was my own personal experience as a patient in healthcare seeing the education that I was given from my own care team, how that has clearly impacted my life, my diagnosis, my relationship with food. And then as I grew to be a professional in the field, I then saw another side of the missing gaps in the healthcare field. I myself was seeing anywhere from 10 patients. I would like to try to squeeze in 15 or 17 in a day, an eight hour day. So, for me to have the relationship building the ability to really dig deep to follow up with people. I wasn’t able to have that because we just live in such a broken system.
I also think a lot of the traditional approaches to diabetes management are severely outdated. And I wanted to know if I ever went to a hospital clinic or something, I was gonna break all the rules because I don’t live by their, like, cookie cutter guidelines. So it wasn’t gonna work out for either of us anyway, so I like to give a really realistic spin on what it’s actually like to live with type one diabetes. It definitely helps having type one diabetes to start with.
Are you saying nutrition and the dietician industry all moved to this approach of being more considered in terms of not just dictating people what to eat and what not, but about, as you say, meeting people where they’re at, so is that a trend in the industry?
I think it’s definitely an upcoming trend. It is usually either intuitive or mindful eating like the common taglines that seem to be thrown around. But it’s really difficult to tell someone that they’re going to improve their relationship with food if they’re still restricting it.
Yeah, Fantastic. So, tell us a bit about your enjoyment of the job. Tell us a little about what you like about the job? What do you dislike? Give us a bit of insight into your own personal experience.
I never thought I would be here doing this ever. All these opportunities kind of just landed on my lap somehow, again, the universe works in very mysterious ways. I was working in all different areas of nutrition and I never really felt fulfilled and I always talked about diabetes to everyone that I met. I was just like, one day I already had a very big following on instagram and you know what, I’m gonna pivot this and just start telling people about my diabetes and if they want to listen, it would be great, but I really never thought I would be here.
My least favorite thing is literally anything on the business spectrum. I hate anything that involves payroll, scheduling taxes, I can’t. I can talk to my clients all day long. That is like my favorite part of what I do is being able to now connect with type ones. I even work with family members. So parents, caregivers, their Children and that to me, it is like the most fulfilling work that enables me to actually do the one on one work because hearing the story, seeing the transformation is something that I don’t take for granted. I understand and recognize how incredibly lucky I am and literally, I think almost all my clients have seen me cry on camera because I just get so emotional about it.
What’s that come from?
So I am an incredibly empathetic person. My reaction to literally everything is to cry. So if I’m angry, sad, happy, I just cry. So if I see them having this problem, we dig really deep. So if they’re having this really big monumental breakthrough and they’re crying. I’m like right there with them and I’m crying too.
That’s really sweet. So yeah does that come with a cost though? I imagine it would be quite draining to some extent. Especially if you’re supporting people most days and you’re having long days and if you’re doing back to back sessions does it take its toll?
So I do have to prioritize my own self care in many ways but I have a lot of things that really get me down. The social media presence can be a really dark dark place and I hear a lot of sad stories from people not being able to afford their insulin, their supplies, all of that stuff and it just breaks my heart that not only in the U. S. But all over the world people are experiencing such a stigma such as an inability to have access to care. It’s sad. It’s incredibly sad.
Yeah I can imagine so that’s interesting that you know I think it takes a special person to be able to give people that energy and be there for them. That’s really impressive.
Yeah. It’s not as easy as it looks. Sometimes there’s definitely days where I cry on my boyfriend, I sit on the couch and just cry with my dogs. But I’ve tried to think back and for me, like my biggest motivator is Wishing that I could be the person I was 10 years ago. And in a lot of ways me doing all this work is almost like healing my own trauma that I’ve experienced throughout my whole diagnosis.
That’s quite common, isn’t it? And it maybe even a bit cliche that therapists getting into, not saying you’re a therapist, but I think in that whole world of what do you call it as support or I suppose I use the term therapy but it’s common that people get into those areas because they have a personal interest and there’s something that they’re looking to improve in themselves and therefore they jump into a world and then end up actually becoming really good at supporting other people along the similar journeys.
Yeah. I think the qualities that I have are great because a lot of people may have, you know, they might be experts in diabetes right? They might have read all all the books that are out there about type one diabetes, they might have great A1Cs themselves and especially now there are a lot of coaches kind of coming up into the field but what makes it, I think incredibly special to me is I not only have that personal experience, but I’ve gone through like 6.5 years of school for this. So I put a lot on the line between my student loans and all of that stuff too, you know, really dedicate a big chunk of my life to nutrition and understanding the ends and outs of all of that. So I think it meshes really well to have both the personal experience, but also that professional aspect.
Are you continuing to study? Where do you look next for developing your skills and your knowledge in this space?
So I have to continue my education in order to keep my license. So I’m always taking continuing education courses, usually revolving around diabetes and also continuing education around being a business owner. But I have a couple of ideas about where I see myself going, but I’m not quite ready to share that yet.
That’s exciting. And what about your personal journey with regards to food and diet and nutrition? Where are you at at the moment?
So I have a beautiful memory and I bring this up to most of my clients and last year was the first time my boyfriend and I moved in together and there was like this whole couch saga are couched and arrived by time we moved in and we were like sitting on the ground, it’s like laughing with a T. V. And like you know the dogs? And we’re like sitting in a new town, we don’t really know what’s around. And the only thing that was open was like this ice cream place and it’s like 8-9 o’clock at night. My boyfriend called for ice cream and I was just like okay. However, in the past, I probably would have gotten so upset that he would have asked me such a daring question at nine o’clock at night, like how dare you ask me to eat ice cream still close to bedtime, don’t you know, that’s gonna mess up my blood sugar like six hours from now because of all the fat or I didn’t go to the gym today so like I don’t have that sensitivity working in my favor, but instead I just said yes and I don’t even remember what my blood sugar was that night. What I do remember is my boyfriend and I literally sitting on the ground with our little pints of my ice cream and like nothing else in our apartment. And for me that is just such a beautiful memory because had that happened 3, 4 years ago, it would have been a completely different story.
That’s really cool to wrap up on. It’s almost lunchtime here in Sydney and all this talk about food is making me think about how I’m going to get my Friday’s pat on the back sandwich.
You definitely deserve it and then have one for me, too, or a side of fries.
Thank you so much for your time, Amanda,
You’re welcome. It’s been really great to cha.