The Diabetic Dialogues – Episode 9: Christel Oerum, founder of Diabetes Strong

Happy New Year everybody!  We kick off our year with a delightful talk with Christel Oerum. Living with type 1 diabetes since 1997, Christel is the author of the diabetes book “Fit With Diabetes” and the main content creator on Diabetes Strong. Tune in to discover  Christel’s adventure and the motivation behind Diabetes Strong.

 

Watch the entire video down below:

Hi Christel, Welcome to the dialogues. 

Hi Pete, Thank you for having me. I appreciate it. 

 

I’m really excited to chat with you today.  Please tell us about yourself and where you are from? 

I live in Santa Monica, California so that is a part of Los Angeles. Right now, I am basically on a beach, which is pretty cool. I can actually see the ocean here so that’s pretty sweet.  I have been living here since 2011. Actually, I’m Danish. I moved to the US from Denmark in 2009. I’m now a dual citizen in the sense that I have my home here, and have my American passport along with Danish passport. 

 

My husband and I are Danish. We moved to California together. We started out in San Francisco, and then moved to Los Angeles. And I just remember coming down here seeing all these amazingly fit people running around as there is an exercise culture here. So that was what had a huge impact on me. I mean, I’ve always been active. I grew up in Denmark, meaning that I was on my bicycle every day going from A to B because that’s a source of transportation, right? Also, my family didn’t have a car for several years, So if we need to go anywhere, you need to take a bicycle or you need to take public transportation. And I’d rather prefer to be on my bike and I used to play a little bit of sports. I used to go to the gym like three times a week, I did boxing classes, and I loved that. It was a lot of fun, but that was about it, you know, it wasn’t structured as it became once I moved to Los Angeles. We’re here in Santa Monica because all of a sudden I said, Okay, well, I can actually work on my fitness. Then my first job here in the US didn’t really allow for that because I was traveling five days a week but moving here, seeing this, my husband then joined Gold’s gym, which is like the original bodybuilding gym and we started working out there, and then I started taking it to the next level by setting dedicated fitness goals like I wanna have more defined shoulders. 

 

That’s really cool!! So now I would like to ask you several questions about the physical activity and fitness stuff because that’s the key for the diabetes community.  Here in Sydney, (So I think most people should know that I’m from Sydney) we also have early morning exercise culture. Certainly, like the exercise culture here is off the charts. I would like to ask you about your story and  background about type one diabetes like when did you get diagnosed? Where were you and how’s it going?

I was diagnosed in December 1997 approximately 23 years ago when I was 19 years old. Most of us graduate high school around that age. After I graduated high school, I had decided to take a year off to save up money to go travel the world. I was doing two jobs and I was also partying a lot because the legal age for going out and for drinking is 18 years in Denmark so I was having fun. I started to get so tired all the time. I worked at a daycare, and then I worked at a nightclub in the evenings so that could be the reason. Also, I was facing frequent urination and I needed to use the restroom again and again. Seeing this all, my family found this is not normal and told me to see the doctor. I could rationalize everything just due to working hard and drinking a lot of fluids trying to be a little more healthy. Anyway, I went to see my primary care doctor and he gave me a lecture about looking out for myself. But he also asked the right questions like How much are you drinking? How are you feeling? At the end of the consultation, he said let’s just measure your blood sugar so he did a finger stick in the office and told me “you have diabetes”. He diagnosed me right there in the office. I remember after that, while I was on my way to home I was thinking “Oh my gosh, I’m gonna die”.  At that time I didn’t have a cell phone so I couldn’t google things online. However, I’m very fortunate that when I came home, my mom was there and she’s a nurse so she knew enough about diabetes that she could explain it to me. She told me you’re gonna be OK” then my mom and I went to a specialist at a diabetes center which was one of the best ones in Europe and it was 10 minutes away from my home. I still remember the words of that pediatric nurse who was there and told me “Hey, You know what? This diagnosis sucks, but there’s nothing you can’t do and it should not be a barrier for you to do whatever you want” and that’s how I live my life now. if you read anything that I write, you probably see that I always say that, there’s nothing we can’t do if we have access to our medications, obviously access information with the right mindset. She was the one who basically trained me in diabetes. 

 

It’s interesting, especially to hear about the initial reaction that usually people have when they get diagnosed. I was just reflecting on my own reaction at the time when I was working really hard, and I was training for the London Marathon and I got diagnosed. I just remember kind of going to the hospital and having a chat with the dietitian. They told me things like “Don’t eat too much honey” etc. I just went home and got on with my life. Never really stopped, neither reflected too much and got back to normal pretty quickly. But I think that people have very different reactions. I imagine it could be quite a harrowing experience for a lot of people

I think it also really depends on who’s in front of you to listen to you and help you cope with it. I mean, if my nurse told me “You never be able to live a good life.” or If she had taken that approach with me,  I might have tackled my life with diabetes completely differently or it might have taken me longer to get to the point where I was like “Hey, this doesn’t have to stand in my way.” 

 

Are you having particularly challenging periods at all? Have you always been able to manage it? Or have you ever lost perspective? 

I don’t think I’ve lost perspective, but I’ve definitely had a lack of knowledge.  What I mean by that is, for example, it took me a really long time to understand that an A1C of 8 was kind of high because I was always told “You’re doing good. Just keep doing what you’re doing.” And I remember at one point my A1C was 8.2  and I didn’t realize that it was on the higher side until I read a pamphlet about the guidelines that said that diabetes patients should have A1C 7.5 or lower. So,I didn’t know because nobody had ever told me, and I never read it anywhere before that. 

 

Before Google came through, You’d rely more on your doctors like whatever pamphlets they gave you, they were the only source of knowledge for you. So I think for me, it was more about realizing that things could be done differently. I remember going to my doctor after reading that and he got very shocked because I was like, “I keep coming here and you give me my prescriptions and send me back home so now tell me everything about it. As now I’ve learned that I could probably do better so can you please give me the tools that can help me manage my diabetes a little tighter as I want to feel good right now because I don’t want diabetes to end up standing in my way down the line.” 

 

How’s your A1C now? 

I generally aimed for an A1C of 6 to 6.5, that’s my goal, and I think goals are individualistic. I have recently posted a YouTube video where my A1C was 6. Last one is 5.9. But I think some people might be sensitive about it and I think one thing is that some people might not feel comfortable talking about their high A1Cs because you might feel like you’re being judged by others as if you’re not doing a good job.

 

Yeah, totally. I have done a little bit of stuff in the social media space recently where I shared images of my CGM results. But certainly, if I look at my chart and it’s fluctuating, I would rather think should I share that? So, sometimes people reach out to me and ask how can they eliminate fluctuations? 

You can’t eliminate fluctuations, because you have hormones in your body that are still gonna be impacted by a lot of things that may or may not be related to food. And I think even if you have ever seen the graph of blood sugar readings from people without diabetes, they don’t have flat lines. It’s kind of a misconception that we need flat lines all the time rather it shouldn’t be like this because the body goes through a lot of stress of the mind and other factors that affect our levels. 

 

Yeah, Absolutely, I actually know such people who put the libre even if they do not have diabetes so after having a  big bowl of noodles they also get high which means that there’s variation in everyone. 

Also, it is important to note that there are other things that often describe and affect your diabetes status. As you know, there are a lot of moving parts and with knowledge, you can get your overall blood sugars down and closer to the normal range. Still, we don’t have full information about what’s going on in our bodies, right? Such as food that you ate impacts blood sugars, How did you sleep? What’s your stress level,  for women, the status of their reproductive cycle can be a factor, and so on and so forth.

 

You said your A1C was 5.9 a couple of days ago, Do you take any carbs? 

Oh, I love carbs. A lot of people also tell me exactly what you’re saying that can’t you eat carbs? or you should go on keto etc. By the way, I hate Keto, after their worst results that I’ve ever had with my diabetes management.  So it didn’t work for me. What I find is that even you can eat crappy food and can still have really good blood sugars. It is simply about knowing what you put in your body,  having a good understanding of how it impacts your blood sugars, and how to react. That is how to dose your insulin, how much, and when? Right? Because if you have a really good understanding of the kind of foods and how it will affect your blood sugar, then you can understand how to manage it and keep yourself in range (as per your target). When I understand the amount of fats and proteins in the diet then I can start to make the calculations in my head and give myself a pre-bolus. Iit’s maybe doing in half an hour before the meal or maybe even before 45 minutes. 

 

My A1C is around 6.9 at the moment and to get 5.9, I’m not sure if I could survive that discipline that would be needed to get that because I like to be undisciplined sometimes. I just feel like there’s no such thing as perfection, and you’re never going to nail it, but it sounds like you get closer to perfection than a lot of people. 

First of all I would say that I don’t get it right every time, and A1C of 5.7 to 5.9 is considered as prediabetes. You can now know how well-controlled non-diabetics are, it’s because they have a system that’s doing everything for them, right? It’s also because the insulin that we inject acts differently than the insulin that their pancreas puts into their body. So insulin that we inject is different from a healthy pancreatic system that one can turn on and off in a way that we can’t right? 

 

The other thing is that we have to act like a pancreatic system and we don’t have full information. I also think there’s a big difference so I don’t mind checking my continuous glucose monitor frequently, I don’t mind taking injections Whenever I need to. I have seen people asking me, “Well, how many times do you inject it”  or how many times I need to? I just don’t care because it doesn’t hurt and it’s not a hassle. 

 

Surely that’s the recommendation that you take it when you need it. 

But for some people, that’s not durable for several different reasons like maybe because of a mental burden. Some people are standing up eight hours a day or 10 hours a day in a job where they can’t necessarily check, inject or eat at any time they need to. So there’s a lot of different situations, I think, people can’t necessarily do what I do, and I think that’s why all the endocrinologists tell that  A1C should be tailored as per your needs and your situation. Thus, everybody shouldn’t be aiming for 5 or 6.5. I don’t think so.

 

We probably don’t really know the realities when it comes to morbidity and mortality for someone who is 6.9 versus someone who is 5.9. There are no clinical data on it so far.

 

So that’s the thing that we don’t really know because the real-world data that we have right now, says you need to control and we know that control is important, but we don’t know what type of type 1 diabetic patient will live longer like the one with 5.9 A1C readings or the other who has A1C of 6.9? or which one of them will have less morbidity and mortality risk. So that’s kind of interesting stuff and it also depends on when you got diagnosed? How long have you had diabetes? That probably plays a role as well. So there are all sorts of little elements that we don’t really know much about. And we feel that hopefully, a 6.9 can live as long as a 5.9. 

Yeah, I  mean, there’s also a reason why the general recommendations say that you should have A1C of  7.5 or lower. I mean, there’s a range from 6.5 to 7.5, right? I think it’s so important that we say it’s personalized. For example, if a woman wants to get pregnant she might need to focus more on her blood sugars to avoid fluctuations and keep her blood Sugar on the normal side to take care of herself and her baby, whereas if you are in a situation where you have “Hypo unawareness”, which is you don’t feel your low blood sugars then you might want to aim for a higher A1C level or higher average blood sugar just to prevent from passing out all the time or ending up in dangerous situations. 

 

Indeed, so now let’s jump to the fitness stuff again because I like talking about fitness, and also it definitely helps all type one diabetics to understand and develop some sort of activity and exercise regimen in their lives. Tell us about your fitness journey and where you are with it now? 

I have seen a lot of people asking me, “Do you exercise because you have diabetes?” but I said no I wanted that for myself and I don’t think ever diabetes has driven me first into it. So what happened in 2014 was that I competed in a fitness competition and I got really into it as a lot of the professionals in my gym told me that you should try this out. So I did that and it was really fun and It went really well. And I did that from 2014 to 2016 and then I stopped but the motive of this story is that it made me conscious about my exercise, my diet and everything was like I was counting every rice and grains right? I used to measure everything. And that’s when I realized that though being active for years, how insanely difficult it could be to exercise with diabetes and I didn’t even have a CGM at that time. So I was managing with finger sticks so I realized how complicated that was. The only source of information for me was one of those pamphlets (given by my doctor) which was completely useless for most situations so I decided that I’m just gonna go online because in 2014, we had Google, and I wanted to find it out but there was nothing out there on google in 2014 about how to manage diabetes. There were just a few articles with very little valuable information that I needed. I’m a fairly structured person so I just created the resource for myself. I said to myself “I’m gonna write down everything, I’m gonna take notes on everything, and I’m gonna figure this out.” and I quickly realized the kind of exercises that made my blood sugars normal. In this way I managed my diabetes by myself and then I started to document this online. I realized that I’m not the only one looking for this information because there are a lot of type one diabetics who need to be empowered to be active and they want to be out rather than just tracking their blood sugars all the time, right? I discussed with my husband in 2015 that there is enough demand for knowledge and we should provide information for folks that they actually need. So we left our corporate jobs and we started diabetesstrong.com which is my website now. 

 

In the beginning, it was more focused on fitness. In fact, I was not talking about my diabetes a whole lot before 2015, though I managed it by myself. I never talked about it. However, when you log on to my website now you will see me talking about diabetes all the time because I realized that my voice could help others and my experience had value. This encouraged me that I  can help provide some information to a lot of people who need it. We can do it in a format where they don’t have to pay to get it, right? So that’s why diabetes, strong.com is completely free and it’s not just fitness-focused anymore. It has everything about health and diabetes (any type). Now, this has become a career and a full-time job for me. I am coaching people with diabetes, but I’m not working as a fitness trainer anymore. I did that for a few years but my strength is definitely in providing information. 

 

My strength is to coach people about how to exercise for diabetes management. I also coach people about learning the basics of diabetes because a lot of people don’t know what it means. If you don’t understand how insulin works or if you have never been explained about it, you will never understand how to manage and control it yourself. You know how different types of exercises impact blood sugars but without knowing how are you supposed to manage it? 

 

Yeah, totally. You said something earlier about your experience being a value. I think that’s really interesting for the creation of self-awareness because that’s not common and not easy. I feel like I’ve learned a lot from my own experiences, and I feel like I could actually share something that could be valuable for many people. 

Yeah, I don’t think I had a light bulb moment. I used a feedback loop approach for putting things out there. Through that, I was like “Oh, my gosh, this is helping me see something about my diabetes care or it’s providing me a piece of information that I didn’t have before. That now means that I can go out and be successful on my own”. I think that feedback loop reinforces it and that’s why I ultimately ended up realizing that It’s okay sometimes that diabetes comes first and then I will actually put “crystal with diabetes” to come first in my life. 

 

Before starting diabetesstrong.com, I worked in the corporate world. I was actually working for a pump manufacturer and I was doing strategy for them, so I have worked for Medtronic, life care health sciences etc.  However, the feedback loop I have, when I worked for these big corporations was non-existent because I was fairly far away from the end-user and it’s nothing like what I do now. I mean, now I can have conversations with people and I have daily interactions with them, and it’s pretty amazing. 

 

Yeah, you’re able to contribute more directly and get more direct feedback. As for me, this brings more purpose to everyday life.

Yeah, it’s not just me who provides knowledge to people but when people reach out to me, they also enhance my information and give me the energy. 

 

When did you quit the corporate world? 

I left in 2015, and it’s now been six years.

 

Has it always been smooth and successful? Or have you had moments of doubt?

Actually, this is kind of an interesting part as I couldn’t have done this alone. My husband and I did it together. First of all, we have very similar academic as well as work backgrounds. Though we worked in different industries, we work really well together and we’re equal partners. The big difference between him and I, though, is that I’m extremely risk-averse as if I hate risks, I get nervous and If you see my retirement plan, it is ridiculous. I never gonna make any money on it because I don’t wanna lose any money on it. Anyway, he’s not that way, right? He’s more of a risk-taker. It has never been so smooth for us because we don’t always agree. We don’t charge people. However, if you go to the website, you’ll see we have advertisements on the web site, that is the way we monetize our website. That means that we are able to pay our bills. If enough people come through the website, read articles, it makes us generate revenues out of it.

 

In the beginning, when we started out, we didn’t have a lot of people coming through. This did not help us in making an income out of it. So we were paying for everything ourselves. We’re paying around salaries and we had some money saved up for the future. We made mistakes and learned from it.  It’s interesting because this was too far from the industry I was working in, similarly for my husband as well. None of us were tech experts and we had to build a website and optimize it so that you guys can easily find us on search engines.

 

As my husband is not the one living with diabetes, Right? So from a website perspective, I do a lot of content creation. We also have other writers who do it for us. Well, I run our social media. I am the front face because I am the one with diabetes. Whereas my husband does a lot of the back end stuff. 

 

He and I met in 2000, so we’ve known each other for a really long time. We actually met before that but we started dating each other in 2000. We went to the same high school. people often ask me, “So how did you tell him about your diabetes?” At that point, it had been three years since I was diagnosed and I didn’t have to think about it, I pulled out my insulin pen and he instantly knew what it was because his older brother had been dating a girl for 10 years with Type one diabetes. So basically, he knew more about the condition than I did when we met, thus, It’s never an issue for us. 

 

I would like to start wrapping up the discussion. We have covered some really good stuff and I know there’s a lot of stuff left to cover as well so I’m gonna keep for a second round (A take two). As you mentioned about Diabetes Strong, is there anything else that is going on with you guys at the moment? Would like to share with us about it,  that our listeners might be interested in?

Thank you for that. I would encourage everyone who wants to be a part of the journey,  we have something called “Fit With Diabetes Challenge” that runs every January so the next one is about to come and it’s completely free. It is basically a three weeks diabetic boot camp so you can do everything such as goal setting, nutrition, exercise and we also talked about mental health, We talk about diabetes burnout and how you can adjust your insulin in certain situations? It’s for both type one and type two. You can sign up by going directly to our website by typing in your email, and you will start getting emails and newsletters. I would encourage all of you to join it. In addition, we also have a really cool Facebook group of 20000 people with diabetes, it is a form of the diabetes community, that’s where we host all the peer support. 

 

Thank you so much, and I look forward to the next dialogue session with you. 

Sure, Thank you so much. Have a nice day

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