Hi Sarah. It’s so nice to meet you.
Hi! Nice to meet you too. Pete.
I really appreciate you giving us some time.
Of course, my pleasure.
So, we both are type one diabetics and this podcast is all about type one diabetes. Tell us a little bit about your story.
I got my type one diabetes diagnosis when I was 13 years old. I wasn’t aware of what diabetes was. And I know that my classmate’s sister had it and she used to take injections because she was the type one diabatic. But I wasn’t so interested in getting to know what kind of diagnosis she had or how her life was. I was drinking so much water. and they noticed it and one day my classmates told me that we are going to do something fun with my sister. We are going to take a blood sugar test. And I was like, oh my God, what are you saying? Like, I’m not sure if I want to do it, but I might be the last person to try. So all my 3 or 4 friends were testing the blood sugar. and then it was my turn and I walked out of the room. I was like, I’m not going to do it. I’m too afraid.
Today I can think about that situation that is okay. I was so scared because I already knew that something was wrong with me and I didn’t want to share it with my friends because I’m a person who cries a lot but a few days later, my classmate’s mom called my dad. It was like, okay. I’m sorry to say, but I think Sarah has type one diabetes. And my dad is a doctor and he told me one morning like, okay, you’re not going to school today. You are following me to the hospital. I think you have diabetes. And it was like, pack your bag with a little stuff. A few codes and it will be all fine.
I guess the symptoms would have gotten to a point where you couldn’t ignore them, right?
Yeah. But when I came to the hospital, they couldn’t even measure my blood sugar because it was too high. So yeah, I think I was really sick for maybe a year. It was like, it was a long time. I was feeling really, really bad.
Oh, you mean a year leading up to the test. You were sick of what sort of symptoms?
Like I wasn’t getting my period. I was losing my vision. And I was drinking a lot and I was up at night like seven times to go through the bathroom and I was drinking so much coke regularly because I was so thirsty.
Yeah. I remember going to work in the mornings and I’d stop at the shop that made like fresh fruit juice and I’d get like a massive cup of fruit juice and I would just sit at my desk and I would drink the whole thing straight just because I was craving that kind of water or that liquid and cold, sugary kind of liquid.
When you’re drinking so much. You only want more.
Do you remember what was in your mind as a young teenager? you know, I was 30 years old when I got diagnosed. I think that there’s some benefit in that because it’s probably easier as an adult to process and manage, right? But I feel for kids because it’s, you know, there’s a lot going on. It’s a complex time for me anyway and I can just imagine that if I hadn’t got it when I was a kid, it really would have just added another layer of complexity to what’s already a confusing period in your life.
Yeah. you want to fit in together with your friends and you want to be one of the cool guys and when you get diagnosed like diabetes and you have to have your own routines and to take your insulin and you have to measure your blood sugars. Like you’re not one of these normal friends anymore and you can feel like an outsider.
Is that how you felt? Or do you remember what the experience was as a teenager?
I think I was at the hospital for almost a week and when I came back, my classmates and friends were like, it’s so cool, can we have a look when you’re taking your insulin syringe like your injections before lunch. So they were really helpful. And I remember that I was having a meeting with a dietician. And she was like, asking what I was having like, and asked my parents as well like what foods we were having. She was like, okay, you were having regular food, home cooked food and you don’t have to change anything. The only thing is that you have to take your insulin before you eat. It wasn’t that much change I think and the people around me were very genuine and had a genuine interest in my disease.
That’s nice. So It wasn’t a negative experience for you then. it didn’t make life more difficult other than the practicalities of it.
But you know, emotionally, like, it was a fairly positive experience. It was the first few days at the hospital. I remember that I was like, it’s okay and the doctor was like, you have to take your shots every day for the rest of your life. And I would like to hear what the age of 13 is like, what is the meaning of life? I mean, can I still do stuff I want to do? And I have so many things I’m dreaming of doing. I guess that my parents were very positive that if I’m learning to handle and manage my diabetes, I can still live a kind of normal life. And they were pushing me to meet my friends and have sleepovers just to get to learn myself too and to do it all by myself because I’m not going to live with my parents for the rest of my life. So they knew that one day Sarah is moving out and she has to do it for her own one day.
It’s a lot of that experience that is influenced by the people such as the doctors that were treating you or helping you manage, the people in your life, your friends and family. I do here different stories from people who have had initially, for some reason, a negative experience with a doctor or food, you know, I think one of the stories that I heard recently was maybe a nurse who was very adamant that this particular type one diabetic person had to have very strict diet. And that kind of led to, you know, just more difficulties. You know, like, I think the type of advice and the support that you get at that stage really will have an impact on how you kind of go through that initial process of diagnosis.
Yeah. I think that 19 years ago, social media didn’t even exist, which I’m happy for and which makes me worried about like how things are today, because now on social media, you can see diets everywhere, you can see that you should be eating this, you shouldn’t be eating that or don’t do this, do that and so on. And it’s like, it’s a crazy world and I think that it’s so easy today to follow into something that could be very unhealthy for you.
That’s a pretty good thought actually and it was a question I was going to get to later on. But seeing as though it was such a good segue, I think that it’s one of the things that comes across very clearly in both your blog and your general presence online, your social media profile, etc. And I think that is, you know, the messages that are out there, how we relate to food and the psychology of food. Probably social media, it’s not something that I have a problem with, but certainly there’s a lot of mixed messages out there in the world of food.
I suppose when you’re a diabetic, the relationship with food is already complex. And I’m curious given that you are pretty open about food and your relationship with it. I’m really curious to understand a bit about that journey. And did it start from that when you were 13? Was the food already a thing that was quite high on your mind at that stage and then the diabetes made it more complex or was it the other way around?
No, it’s the other way around and, I’m happy because as I said before, my parents cooked all the food because I am also having celiac, so I can’t eat wheat and my brother was allergic to eggs, milk and fish? So they already had problems with food. So they like always cooked food from the start and so I’m grown up with potatoes, meat sauce, and carrots. And later on when I started blogging about it and starting to show my curves, I saw that people want to see straight curves and that led me to cut out like carbs, sugar and I was in a really bad relationship at that time. So, I saw that my curves aren’t getting better when I’m not eating.
I like how you use the term curves. It’s a nice way to put it. It makes total sense. It’s a nice way to put it. Tell me a bit more about the curves and what it means. And I suppose it, you know, if I want to say it’s specific to women but it’s probably less common for men to have that, you know, there’s certainly plenty of mixed messages out there about what a man’s body should look like as well but I think generally there’s if we’re just talking purely percentage list that there’s probably more women that are focused on their curves.
Yeah. And I think today it’s really like it could be dangerous because there’s so much on social media, you see all those like influencers, they are looking like a perfect person and they are having pasta and they are so skinny and like this is totally bullshit. I feel like it is possible, that’s why I want to show my social media followers that it is possible to eat pasta, it is possible to eat carbs and food you actually like and still manage your blood sugar. It is possible but you have to give it a little bit of time. Like you have to get to learn how your own body is working with food with emotions, with weather or with your relationships. I don’t want to put anyone in the corner or talk like that about anything. I feel that people are so afraid of trying new things to see outside the box.
Yeah. certainly! I have worked in the area, you know, I’ve been lucky to kind of interact with such an array of people with diabetes and I think you even allude to it in the content on your blog and social media around how individuals take it all right? And how individuals see your experiences and you can’t really generalize, but certainly its a spectrum, right? Like there’s the more pedantic end where there’s people who are very strict on their own diet. And that’s not just diabetes, right? That’s that in general I suppose in diabetes it’s maybe you’ve got a bit more drive to do it because you’ve got to a greater purpose which is, you know, food does influence your diabetes significantly. And so you’ve got more of a motivation to go and control that a lot more.
Yeah, totally. I feel like that’s why I’m trying to talk about more and more that our health care system needs to be more individualized. As your doctor says, okay, you should be eating this and this works but you say like no, it may not do for me, but I’ll try and if it doesn’t, I may change to something.
I think there is definitely not from across the oldest school style and the criminologist and I have sympathy because working in health care, you’re just seeing patients all day. And so the energy that would be required to really invest in an individual is so commendable. But it must be difficult to really sit and listen and really give individual advice to every single person because the energy needs to be really high.
And how you say those guidelines to a person who just got diagnosed for example I mean you can say one thing in like five different ways and you have to feel how the other person in front of you is feeling. And that’s why I’ve been changing hospitals a few times because I’ve been having doctors that are like oh my God you can’t eat french fries and oh my God you can’t have wine and I was like wait a minute my A1C. Is perfect. My values are perfect. Why should I cut off food I really like and they keep on telling you from the textbook that we don’t recommend this and this.
I get where they’re coming from and with that then you can’t argue with it. But I mean I think healthcare workers trained as scientists right and they’re good at science. But I don’t think they don’t spend time on interpersonal communication or in coaching people you know that’s just naturally are good and some naturally aren’t that good and they just look at the science and so I’m really grateful I suppose to have such a great healthcare system and I really love our doctors and nurses and and that community, I’m so supportive of them, especially at times like this., I think that it’s improving right? It’s definitely getting better.
I think that the new generation of healthcare workers are a little bit more cognizant of situations like this and knowing the science, but realizing that the science is only relevant to the person that’s interpreting it and that’s nothing. So you were saying that it was the diabetes that kind of was the instigator for what complexities psychologically for you and your thought about food.
Well, I think that I can’t blame my diabetes for my psychological issues or problems, I think there’s so much more than that and Of course! it’s a part of it. But as I said before, I was in a relationship, I wasn’t happy about it and I didn’t notice myself at first then I had a few relationship problems and my family members did not really know and I was having questions like who am I? What am I going to do with life? What is life, the meaning of life and I was thinking so much to have control over my diabetes and when I didn’t eat then my blood sugar and my diabetes was pretty good and it’s scary because I was losing my social life, my friends, I was losing my job and I didn’t want to see how bad it really was. I just wanted to be at home and sleep.
The impact on work and friendships was coming from the need to control and thinking that you know if you are out socialising that it was harder to control?
Yeah It was so hard because with social life, it is like food are included, drinks are included and talking about life and how everyone was talking about there happy life and they like their jobs and the salary and boys and then I thought that it was so hard because I was single, I lost my job and had relationships problems and I was like I don’t want to be there, I don’t want to be there with them and be the person who also has diabetes, I don’t want to be the person and I didn’t really like myself and how the person I saw in the mirror.
Yeah it’s incredibly brave and I mentioned to you earlier, but it’s really courageous I think to have these conversations and for you too. The open and transparent in the way that you talk about it on social media. It’s a really positive thing. I can imagine it and saying that stuff out loud even though you have, you know, in some ways come to terms with it. It’s still I think whenever you say those things out loud, those things that are difficult in your life, there’s always a moment, isn’t there?
I was 24-25 and if you are looking at eating disorders in general? It’s almost like in younger ages. But then you actually see that today that people who are over 25 are getting the same issues.
Have you come across it in the community? Is it something that you’re talking with other diabetics about? Are you getting people responding to the content you’re putting out there and saying thank you, I’m a diabetic and have had similar experiences.
Yeah. I feel like it’s so hard because when I was in hospital for my eating disorder, they were giving me a paper with some checkboxes? if you can check every checkbox then you have an eating disorder. I was sweeping through and, I asked, I’m not sure because I have diabetes. So I always have to think about what I’m putting in my house. I can’t just let it go. So am I going to have an eating disorder for the rest of my life? Am I ever going to be like a healthy person again? And what is a healthy person In the combination with food when you are a Type 1? So more people who have diabetes may have an unhealthy relationship with food even if they don’t think about it.
Yeah, I agree. And I think the term in disorder, it’s a difficult part of life, isn’t it? Because it’s a relationship that you have with food and how you manage food and how, But you know, I think the term eating disorder just doesn’t that well with me because it has a negative connotation in that it’s a disorder. But in a sense, again, it’s like we all have some level of complexity with food or we all have issues with food, right? Who doesn’t like to eat a bag of chips and feel guilty about it afterwards. Right?
Then you go back to yourself and feel like, do I like to eat the bag of chips? if yes, do it. If not, why do you do it? Because I feel I’m talking about a lot of the important balance in life. And I feel like I’ve had a few discussions with others who have type one diabetes, they’re so angry. Like they can’t eat candy like their friends can. And I was like, how are they eating candy? And they say that people can eat a box of candy and I can’t. And I was like, they don’t eat a box of candy every day and they don’t feel good afterwards. And I’m like, no, they don’t. So just enjoy a few pieces and you will feel satisfied, you don’t have to eat like a box of anything. You don’t have to eat a whole pizza if you don’t want to. But if you have to do it in a balanced way, you can still enjoy the good stuff in life.
Yeah. There really aren’t any limitations on being a Type one diabetic, right? I mean, aside from maybe, I don’t know what really couldn’t be a type one diabetic do and go somewhere where they need insulin they can’t have it. And I don’t know where those places exist. I mean, I’m sure you could be an astronaut and have type one diabetes. I’m sure there’s probably a few, but very, very few limitations. So how long did it take? And I imagine there’s still some element of psychology that you’re working with around food, but like how long did the more difficult period last for?
Well, I’m not sure. I think it started a few years earlier than I was 25 but today, I’m feeling like so grateful for having this period in my life because then I had to think what is life and how important it is for for me and my everyday life to make choices for myself, not for anyone else and see that it is important to actually enjoy to hang out with friends, to enjoy having a glass of wine or the pizza or bread for breakfast or anything else like an ice cream, but it’s summer. I think this is something I have to think like every day and try to remember how lucky I am. I have like all my friends back, my family is still supportive and to have like this community. It’s fantastic.
Yeah, and I think it’s fantastic. When did your interest in sharing a story be open about it on social media and working in and supporting the community come about?
I felt like when I was in hospital, when I was 25 and admitted for my eating disorder. I felt so ashamed and I was like this is not who I am, I don’t want to be here and so on. So I think that when I was starting to feel healthy again and to have the energy to do something more in my life than just thinking of what time it is and when it is the time for lunch, I was starting to think that okay, I have to talk more about diabetes and eating disorders. So that was the starting point for me to open up my social media again. When I get so many likes, messages and feedback from people who were like, oh my God, I’m so happy you are talking about this, I’m not sure what to do in my country, who to talk to, who to get help from and so on. So that was the starting point like 12 years later.
I imagine you get that process of giving back, right? And not just focusing on yourself, but like supporting others and giving something outside of yourself is really helpful, right? How has that experience been like being open and transparent on social media about sensitive topics, what’s that been like for you?
It is scary to actually be open to people you don’t even know who are watching your instagram or your stories or so on but to do it like once and to get some kind of feedback and then you notice that people want to see the real life, it can be a balance between like, fashion, pictures but I think people want to see the real you and life is has ups and downs, like I don’t feel happy every day, but no one does.
Yeah, I think that in social media work, there’s a lot of courage in there to be open, right? and to share your story at the risk of whatever comes back. So that takes a lot of courage, but also taking your own time to invest in the community and support the community also is a really important part. And you’re choosing your time to give it to other people and other causes and that’s what I think it’s easy to look at that work and just not really always understand and think about yourself like you’ve chosen to take that Saturday and do that thing for that community rather than do things for yourself. And I think that it’s really commendable.
We talked a bit earlier on this idea of perfection. Did that kind of play a role in the food and in the psychology around food? I know like myself recently I went through a period where my levels were really high for maybe six months and I think that my insulin sensitivity has declined, right? And I was sort of letting them be high. I was kind of choosing or allowing my levels to just be high for a while, because ultimately perfection is not possible, right? And perfection being in that range 100% of the time because that is just not even a possibility. You almost mentally have to go through it. I almost had to choose and needed to have a few more hypos, I probably needed to choose the lower side of perfection for this point in time. So that has made me realize because we can’t choose perfection, we kind of have to choose one side or the other, you know, and it varies right, moment to moment, day to day, month to month etc. but at the moment I’m choosing to be low. I have to have my lollies with me a bit more often. Last week I had more hypos. Tell me about this kind of content that you touched on it as well in your social media, but talk me through this concept of perfection and your thoughts on that.
Yeah, but I feel like what is perfection for a person without diabetes? What is perfection for them? I mean no one is perfect and to have diabetes and its main goal is to keep your blood sugar stable in some way and if it is a little bit higher a little bit lower, maybe that’s perfect for you. But life is an ongoing thing. I mean life is here and now and if today has been a real share today, well take a moment and just accept that because in a few hours it’s a new day and that could be a really great day. So I don’t think we have to think too much about like the highs or the lows or the bad things about having type one diabetes, we have to focus on the things we really like and to make something good about it because life is really beautiful when you’re meeting new people, you are like talking about traveling before or I mean, hanging out with friends, you love with your family. That’s perfection for me to be able to laugh out loud with my friends and I have no idea what my blood sugar is. But if I’m having a good time, it doesn’t matter. Like I think we have to do it, change the focus sometimes and don’t be so control over what number am I having at the moment? And what number I’m having in about 10 minutes.
Yeah. I was actually reflecting on this earlier because this happens occasionally, right? I was at a friend’s place last night, just me and two other guys hanging out with some of the music, having a few beers and then today, I was reflecting on the night and I was like, I don’t remember what my blood sugar was last night. I mean, I could look at it and see what it was and it was kind of good right? The whole night. But you know, it’s a little bit unsettling to go and I didn’t think about my blood sugars for like five hours. it’s almost like you become not a diabetic for that period of time, right? You forgot that you’re a diabetic for a moment. Which is a really nice feeling.
Yeah. And then of course you have to think sometimes that okay, I am a type 1 and what should I do to manage my blood sugar in the best way. We have to still manage our blood sugar somehow. But yeah, I like what you’re saying, I don’t. I have any idea what I had last night but I had fun. That’s the important thing.
If you know interestingly, people who wear continuous glucose monitors will check their blood sugar. You almost have a tool that tells you that you’re not perfect in a sense. Whereas I can’t try to think of like a non diabetic who’s not checking their blood sugar. I suppose perfection just becomes about neat handwriting or how your desk looks or you know these other kinds of more esoteric things where with blood sugar it’s a very exact thing, right?
So every time you check are you being perfect in this moment or are you not being perfect? I suppose it could potentially lead to people being overly pedantic about that right? And being too controlling with trying to find that perfection and I suppose that you probably would have to have some type of inclination or something in your psychology already that it triggers right? Like if you already wanted to be controlling in some ways and you now have this tool to help you be more controlling. It might magnify that part of you.
Yeah, a few years ago I had these discussions with a young girl and I was asking her out for dinner and she was a Type 1 and she said “Oh what time is it?” and I was like okay, we’re meeting up with my friends at 7 o clock, so we might have dinner at 8: 30 it’s late as it was saturday and she was like, oh no I can’t. I said okay, but are you sure you don’t want to come? She was like, no, I have to have dinner at 6 o’clock and I was like, what? I asked cant you take a sandwich or something, some snacks before, if you’re hungry? I mean I have diabetes as well and I get hungry even if I don’t have a low blood sugar then she said because my doctor said to me I have to have dinner at six, breakfast at eight and lunch around 11 or 12 noon and I was like, can’t you change that and she said no. And then I started to think over that because as a Type one diabetic, it is good to have routines because it’s easier to manage your blood sugar in that way, but some days you want to feel that you can be spontaneous and to have a late dinner or to have like snacks or chips or whatever and that shouldn’t be a problem.
I mean I think again it’s very individual, you can’t generalize but hopefully people can see that it’s as important to enjoy your life, you know, because you’re only controlling your blood sugar to prolong your life. And then that’s a very blunt way of putting it. Right? But what’s the point in prolonging your life if you’re not going to enjoy it a little bit along the way and your diabetes won’t kill you if you have a high blood sugar for a few hours totally. And I think that if we look back at data and we can see that Type one Diabetics Live shorter lives on average. Right? I also know type one diabetics right now who had it since they were kids who are like 80 and 90 years old. And that’s for a time when treatments were very rudimentary, right? You know, the whole process of insulin and monitoring blood sugar is not too developed and there was a point when you have to test your ID in order to know what your blood sugar was. My point is that now that we have this technology, there’s a good chance that life expectancy of a type one diabetic isn’t that much less now and I imagine that we’re catching up with the general population. It’s kind of a weird way to put it. But you know, I’d like to think we’re catching up with the general population anyway.
Yeah. And I’m so happy because I have an old friend. She’s 63 I think And she has been a type on diabetic for 54 years. And when she was diagnosed with diabetes, she was having like one shot a day only and she is living her life at the moment and I feel like it is possible.
Yeah, it’s totally possible. So I think you’re right. It’s really good to remind this to young younger people with Type one diabetes. It’s good to remind them that, you know, with the tools that we have now, you definitely have got more of a license to enjoy your life. So I’m not sure we mentioned in this chat, but I know that your dad has type one diabetes and I imagine that I would love to have a dad who had type one diabetes because I imagine it’s really nice to have that support.
And it’s a funny story. I was in France this summer together with my dad and we were traveling from Stockholm where I’m living currently. So he came the day before and had a sleepover. So we took the car to the airport and when we arrived at our AirBNB room,he said that Sarah, I forgot my bathroom bag? And I was like, oh, but we can go out and buy you a new toothbrush because I had the paste here with me and you can borrow from me. He was like, well, my insulin was in that bag and I was like, holy fuck, So I asked okay, what insulin are using? I have with me, so you can have my pen. So he got an insulin pen for me and he was like, I’m so happy. My daughter has type one as I do.
Wow what a loving parent. So you are really lucky. And did he have it when you were actually diagnosed?
So he got it when he was 54 after my diagnosis.
Wow. So how long has he had it for?
So he’s 68.
Oh, wow. That’s kind of fascinating. I mean that’s a very late diagnosis that isn’t it at that time when he got his diagnosis?
It was kind of a weird thing as the media says, you get type one diabetes when you are a child, right? But now when I see and hear people like, you got your diagnosis when you were 30. And my friend got her type one diagnosis when she was I think 27, my dad when he was 54 and I feel like more and more people are getting type one diabetes at an older age.
It’s incredibly sympathetic of him to get diabetes to support you.
He can say that he’s happy that he got his type one because now he can relate how I was feeling when I got my diagnosis and like life isn’t easy with diabetes sometimes, but we can handle it together now.
So this gives a really good message to start to wrap up on. I just want to compliment you again on the courage that it takes to put out there, the type of information that you do because I do think it will make a difference in people’s lives who read it, who need some support. And I think generally the way that you speak on social media is incredibly philosophical. It’s inquisitive and I think it’s a really nice style. So thank you for putting yourself out there like that. I think on behalf of the community in general, that’s appreciated.
Thank you so much. Pete.
Pleasure! It’s really nice to talk to you and I really appreciate your time.
Thank you so much!