The T1Dialogues – Episode 13: Greta Ehlers, Social media and T1D – raising awareness and creating a constructive platform, Sweden

Hi Greta, welcome to The Dialogues. 

Hello Pete,  happy to be here. 

This is our 13th interview that we’ve done so far in The Dialogues sessions and three have been in Australia, but the other 10 have been all in US, So, you’re the first European. 

Well, that’s great. 

I think probably in terms of my engagement with the diabetes community, for some reason, your social media profile was one of the earlier ones that I noticed and it’s actually really nice to actually connect with you and to have this opportunity to talk to you a bit about your social media stuff but before we jump into that do you wanna give an introduction about yourself?

Yes, my name is Greta. I live in Sweden, where the days are getting longer and bright at the moment, which I’m really happy about. I’ve been living with type one diabetes for almost 17 years and around  three years ago I started my social media account which we are going to talk about later, I suppose. 

I’m currently writing my master thesis, and I’m hopefully done in May or June. And then let’s see what happens. 

That’s pretty full on. I’ve got a note here actually to talk to you about your master’s towards the end. So I’m curious to understand what you’re up to in that space. I think for anyone who is diabetic, all of their experiences whether they’re academic or athletic or career wise, we  all tend to intertwine, right? Because diabetes is a part of everything that we do every day and I love to hear a little bit about your earlier diabetes experiences when you got diagnosed.One of the questions I haven’t had a chance to ask many people is what’s your glucose level right now? 

Well, I can check. I actually had a hypo just before you called me. It’s 6.4 millimoles/ liter which is 115 milligrams per deciliter. 

Did you wake up with a good reading? 

No, I don’t know whether you experienced that, but I’m in that kind of time where no matter what I do, I would always go low during the night like I can go to bed with a perfect stable blood sugar, but then eventually, at  five in the morning, it would wake me up, and it gets below the range, so I might need to adjust. it’s quite annoying. 

I can truly relate to that. It’s frustrating, right? Well, like I have the opposite problem at the moment. I wake up with high readings. Like this morning, I woke up with the reading of 11, But like the last couple of days, I woke up at 15. Actually, I look at my thing and I’m like “Oh, shit, that’s eight hours of being really high.” So yeah it’s frustrating.  

It’s also that I think it gets worse during the night. Like if it’s a bit up and down during today, I really don’t mind too much. But at night there’s like it takes so much energy. If you don’t get to sleep through the night because I have the dexcom and it wakes me up. if it’s over 15, It wakes me up and  it’s also a bit annoying because of the continuous beeps and alarms. 

I have had a 10 day period where I wore a Dexcom and Libre and I have to say there were lots of reasons why I prefer the Libre. But the alert thing, I thought was kind of nice for hippos, but when you get it again and again it’s annoying generally. 

Yeah, I really had the same problem in the beginning. I had the Libre at first, like a couple of years ago, but I really struggled with Hypos like I had hypos five times a day. So I got to dexcom so they actually have something to wake me up during the night in the first couple of weeks, I was so irritated by it and I was like “Can you shut up?” It’s just so annoying. But then I kind of set different times in range and so on. And there’s actually quite a lot of settings you can do. 

I think one of the biggest learnings, actually, I’ve done, and maybe that’s a good way to start with is that you know that you have the dexcom on your lock screen of the phone, usually. So whenever you would like to take a look at your phone. You would see your sugar level and I used to  get so paranoid somehow, like I really did check it every couple of minutes, I would check my phone and see Oh, is it still stable, or does it go up? And at some point, I think it just wasn’t healthy anymore. So I deleted it from the locked home screen so that I actually have to go in the app to see and it has helped me a lot because I was just checking it all the time. And then, you know, my diabetes nurse told me it’s completely normal if it goes up after you eat something. But if I would just see that there’s one pile going up, I would immediately take insulin because I just did not  want to be too high. But then, obviously it was too much insulin. So it was a chaos.  This is one of the things I’ve learned with the dexcom that maybe it’s not too good to have too much control and to check too often. 

Was it your diabetes nurse’s recommendation that you went onto dexcom over other CGM options? 

Yes, I think I was told by my nurse that I should have it. I slept very badly because I was so stressed all the time that I would be low and  that I would wake up automatically all the time thinking what’s going on? And then I was like, “I would like to try the dexcom” and my nurse also said that it would really make sense for you because you are so low all the time. 

So, I had this conversation with my diabetes nurse recently, and it was on the topic of hypos that whether I should be worried about having a hypo at nighttime, and she was kind of very clear and said that there was no risk for me. It was kind of counterintuitive, but I trust her because she’s so experienced and she said there’s no risk for you. Because I know people have drastic problems and I know that there are deaths that occur through hypos while you’re sleeping. I remember a friend’s friend who did pass away from an overnight hypo so that’s the only kind of semi connection I’ve ever had. It was a moment that surprised me.

I think it really depends, because I had hippos and I was at 3.2 for six hours without waking up, but for me, It changes, depending on how my blood sugar levels are. General, if I’m really high like I would wake up at a reading of 5 or 4.5. So, my body was so used to having these high blood glucose levels that I would feel low even though my blood sugar would be perfectly fine. Of course, if I’m in that period where I’m very low all the time, you kind of lose the feeling for it. Like I would have problems with waking up if I’m very low as your body doesn’t sense it the same way. 

I suppose it is a desensitization issue, right? Like that’s what I hear from people who have had hypos that they become desensitized, and that’s where the risk is. 

Yeah, and I would say that everyone has different preferences and sometimes also the dexcom stresses me out. I just keep it on the  flight mode, If I’m in an important situation or any event. Like I do attend classical concerts and it’s my nightmare while sitting at a big symphony hall where everyone is quiet and  your dexcom beeps again and again.  So usually I put it in flight mode as I trust myself like  managing for a couple of hours without the dexcom and I really want to avoid these awkward situations. 

Yeah, everyone wants to avoid such situations but at times  they are kind of unavoidable,  aren’t they?  Like I remember one time I was out for a run in the bush here in Sydney and I started getting low. I think I must have had a CGM on to be aware of it, but I had to run up to someone’s door of their house and be like, “Excuse me, I’m sorry, but I’m type one diabetic. I’m going low and I need some sugar” and they invited me and gave me sugar. So we have so many stories like the one I just shared.

Yeah, actually I’ve never knocked on someone else’s store, but it’s great that they invited you in. So I mean, it’s maybe a bit of a problem with type one diabetes that so many people still don’t really know what it is exactly. 

Well, I’ve had to walk into stores before and just say, “Hey, I’m really sorry I went for a run and went low so can I have something with sugar in it?” And they give you a lolly or something like that, but it still happens occasionally, Maybe it’s because I’m not the most prepared. I tend to be a little bit nonchalant about managing in some ways and I guess they are the results of that. 

You know, I’ve had it now for 15 years and it still happens. For example, I went to yoga class two weeks ago and I used to take my sugary drink with me but on that day I drank all my sports drink and I was still going low, so I had to leave the class.  I don’t know. If it only happens to me or others too.  

No, I don’t think it is only you who faces that. 

So, does that happen to you as well? Do you have those weird moments where you had to leave a situation or ask for something from a stranger? 

I don’t think I ever asked a stranger actually and I used to be very much prepared. I know that I have so many hypos that I always bring enough sugary products and always bring my credit card just in case if I’m out somewhere, I can buy something if I need to. 

Well, that’s good. Maybe I need to rethink and certainly my wife would say that I’m a bad manager because she always reminds me that “Have you got something?” I’m like, “Oh, I forgot to” and  she says “ Here you go” 

That’s great. Usually my friend asks me the same question, “Do you have something for your hypo?” and I used to say “Here’s it” then she says “Is that enough?” And I’m like, “I bring another one.” So we need these people who remind us to have our stuff together. 

I would like to ask this question that came to my mind:  were you diagnosed quite young? and have you had a longer period with diabetes and therefore maybe had more hypos in your life? 

Yes. I was diagnosed when I was 9 and now  I’m 25 so I’ve been living with it for a couple of years and I don’t really remember times where I had a lot of high blood sugars because my major problem is being low. Even the high blood sugar levels make me so much more uncomfortable so I can be low. I get annoyed, you know, because I just don’t like to go up in the middle of the night and drink or eat something. I am totally that kind of a person who overcorrects their blood sugar because I hate being high. 

So what’s your HBA1C at the moment, if you don’t mind sharing with us? 

No, no, that’s fine. I have not checked it that often. I think the last time I checked in June and  it was 7.0. I think the problem was  that two years ago I had so many hypos, I would also like to over-correct my hypos, You know, because I have these very bad hypos where  my body keeps on signaling me to eat or die and then I would eat to manage it but then it would be really high. Actually, I’m a bit skeptical towards HBA1C. Though it’s great, it also doesn’t tell anything about your time in range. You can have a perfectly fine HBA1C  like 6.0, for example, but then you look at the blood sugars and it shows low all the time. 

So basically, I was diagnosed at 9 and then I had some teenage years where I really stopped caring. I know some other people have been through this as well, where it’s just annoying. I think when I was 14 or so, I was so tired of it and had HBA1C between 7 to 12 because I just really didn’t care anymore. 

So What is that mindset that you were going through at that time?  I think that adolescent years with  diabetes are challenging enough right? I literally  have a soft spot for them and I I am sympathetic towards teenagers because it’s not that much fun for a lot of teenagers, right? It’s a tough period of your life, like having diabetes. I would like to hear about the mind set and the thought process that was running at the back of your mind during that age related to type one diabetes. 

I think that at a young age people do not understand or care about the long term consequences and that’s what you will hear like if you don’t take care no2,  in 20, 30 or 40 years, you will feel the consequences of your high blood sugar. But then, when you’re 13, you’re like why do I care for the next 20 years? 

I had this very bad mindset, and I remember that I’ve had a blood sugar diary where I actually had to write down where we used to write our blood sugar level, corrective boluses and the amount of carbs we ate so that if you go to a doctor, they can check what’s going on with your blood sugars. Even to avoid the confrontation from my doctor, I just faked all of them so if I was 18, I wrote 6. I also didn’t want my HBA1C to reveal my secrets. My doctor then told my parents that it doesn’t make sense. I remember talking to my dad who told me  that this will be so bad for you in the future. Then I kind of took care of it, but after just 3 months  I was tired of injecting and  to look out for what I eat or not (like calculating carbs) and I miscalculated and woke up with bad readings so  I just didn’t check anymore because we had to do these finger pricks all the time. When my parents asked, I used to say “Yeah, it’s fine.” because I just didn’t care anymore which was  so bad but I think I was just very frustrated. 

It sounds like you’re lucky that you have parents that were supportive and you listen to them if they give you some advice, which is not that common? 

No, in fact there were a lot of times I didn’t listen to them, but I think I kind of realized it for myself that  if you live for a couple of months with high blood sugars all the time, you can feel it like you’re tired, you’re thirsty all the time, you feel dizzy and you feel sick. And I mean, it’s not fun, obviously. So I think it was kind of a combination of talking to my parents and kind of realizing that I won’t hurt anyone but eventually I will be the one who will have to live with the consequences, right? And it’s not worth it at all. 

So it sounds like you corrected pretty quickly, and I suppose in some regards got off a little bit lightly like three months of recklessness and then kind of back on the course again, which is good. Obviously your parents were a big part of helping you and supporting you. 

As we mentioned beforehand that you’ve lived in three different countries so you’ve had exposure to three different systems. Where were you at the time when you were diagnosed as a teenager? 

Yeah, I got diagnosed in Germany. So, I had a really good doctor and he was great. I had him until I  moved away when I was 18. So it really wasn’t a healthcare fault or anything but I just felt like it’s not worth it somehow. 

So, I was diagnosed in the UK and it is great in terms of  the support and the access to healthcare. Then I was in the U S for a year, and I actually just so much  stocked up my supplies that I didn’t have to engage with the health care system in the US.  And then I moved back to Australia so I felt lucky to have been in these systems that have been set up to be supportive. As you live in northern europe, so I’m guessing you may have had similar experiences. Like my personal perception of Northern Europe is that the health care systems don’t get any better than Scandinavia in general. I think you’re probably in a part of the world that you can count yourself lucky because of the system you’ve been a part of. 

Yes Definitely. I’m very happy and privileged because I don’t have to pay for anything. I don’t need to pay for my insulin, my dexcom. 

So, yeah, that’s great. Is there variation that you have faced in terms of your health care experiences across the region? 

There are some very slight differences, but Sweden is a bit less complicated for example, if I need a new insulin, I can get prescriptions. I can use them for  up to three times and then I just log into my  health services page and I tell my nurse that “Hey, can you give me a new insulin prescription?” And then she sends it to me digitally. Then I go to the pharmacy and with my social security number the pharmacist provides insulin to me.  

In Germany, for example, as I’ve not been living in Germany now for quite some years, so I don’t know whether it changed, but I suppose not. So, you go to your doctor or your diabetes nurse and tell her that you need new prescriptions. They give you this paper and you go to the pharmacy with that paper and you get your insulin. But the next time when you need more insulin, you have to go to a doctor again and get a new piece of paper. Basically. I would say that Sweden is more progressive, and has an comparably easier system and it doesn’t take any time or energy to get those stuff. And I’m in a very privileged position to even complain about that. But other than that, I don’t think there are so many differences when it comes to diabetes. 

You know, I’m kind of a person who doesn’t go to my nurse frequently or I don’t have a lot of contact with her because I feel that I’ve been living with it for so many years that I can pretty much self manage it by now. 

Have you got your eye checks and general body checks or  when was the last time you had an eye check? 

I have done it in June. They do that once a year here in Sweden and in Germany and they do blood checks as well.  I usually go to my nurse twice a year here in Sweden. I think in Germany they have some different protocol like you may have to go every three months. But of course, it depends on the kind of therapy line you’re on. They check your blood and your feet for any issues. 

That’s Nice. I would like to know about your social media work and your contribution in this space. I also mentioned at the beginning about seeing your profile and seeing the messages that you’re sharing really resonated with me. And I’m curious to kind of understand what drives it and what is the motivation behind this. What made you do it?

I think at the beginning it wasn’t so much about having a voice and  it was rather about meeting other people with type one diabetes. I never went to all of these, diabetes camps and I never ever wished to. So with that, of course, also led to me not having any other friends with type one diabetes. I literally didn’t know anyone. I think it was three years ago when I created my profile  and I just really wanted to get to know other people. I did not intend to start sharing things. So, I did that for a while, and I mean, I did some postings, but it wasn’t really any good quality. It was just like my food, or  sometimes about my blood sugar and so on.  I remember doing letter boards and  with time, I started paying attention to the community. 

Yeah truly, those letter boards were the thing that resonated with me. I remember seeing the people’s reaction and  responses to them. And certainly if we look across social media in the diabetes community, the reactions and responses were kind of magnified more then other profiles so you struck a chord in some way. That’s what sparked my  interest so that resonated with me and obviously with lots of other people because of the general reactions that you’ve got. So was that just the luck or were you completely surprised by the reactions? 

Yeah, I was very surprised. I remember that one of my first boards I ever did got over 2000 likes, and I didn’t have as many followers at all at that point of time. So, I was like wow, that’s crazy. My intention is that there’s so much misinformation on social media, right? and of course, people share their experiences, which is great, but it’s also not the truth, like it can’t be generalized, because it’s so much of their personal stories or experiences and It’s such an individual condition. 

I’ve always been very interested in research. Also through my studies at university I just started looking at topics which are not spoken about and whether there’s any kind of research about it. For example, one of the earlier boards said something about type one diabetes and menstruation, and I really just took a look because there’s so many connections between diabetes and anything going on in our body. So I did some research and there’s actually quite a clear connection. I was like, Wow, this is not talked about at all. Though  I’ve been to my doctors for years and no one has ever told me about  that. Then I decided to look more broader. After I shared this, I got so many messages telling me, “Thank you for letting us know because I didn’t know that.” It explains to us that this could be a consequence of living with type one diabetes. So, that’s kind of what really motivated me to go on, that people really enjoy having like a research based knowledge. Then I started doing some research. 

I have access to our university papers  and the Lund university is a very big and prestigious university with a lot of research. We also have a university hospital where they do a lot of research for diabetes. So I had access to research based material, and I think it’s interesting. It helps me  to learn a lot about and people also appreciate that kind of information that you can trust or rely on. I used to also state all the sources used in my texts that people can actually go and read the original source. 

It’s always better to have the information that is accurate and valid so It resonates in some way.  I really would like to thank you for actually thinking about it in that context, because it’s certainly important for me, like whatever language I’m using, I try and be cautious. You know, we sell patches and our company is Not Just A Patch so we try to be very cautious about any claims that we make because, I don’t want to bullshit anyone like it’s just a patch but that is  not just a patch. You know, what resonates with me is the general thought to be a little bit more accurate in this world as there’s a lot of diabetes social media out there and it’s nice to have a community right. But  giving research based and accurate information is something that stands out so thank you for that. Please tell us what were the findings about menstruation and diabetes that you put on the board? 

People with type one diabetes are at a higher risk to have more disturbances during their menstruation. Also, they have a high risk for having longer and heavy menstruations. If you’re diagnosed before the age of 10, you have a high risk of having a very late first menstruation (menarche). Though, I personally wasn’t affected by that,  I know people who have reached out and they were like, I have type one diabetes and I got my first menstruation so late. 

There are so many interesting connections that the  healthcare professionals don’t talk about which I think are very important. So I tried to get these taboo topics, like how can type one diabetes affect your sex life and all of that? So,I think it is very much appreciated. Now, luckily, more people have started to talk about it, but you need to spark these conversations as well.  

It sounds like that wasn’t the original intention and you didn’t set out to have a significant voice or maybe you didn’t know what the possibilities were when you started off. Now that you have seen the impact that you can have so does that change your approach to thinking about what you’re sharing or posting on social media? 

Well to be honest, I don’t make any money from it. If I’m not in the mood, then I just don’t post anything. I am not  forced to do anything. I know a lot of people who produce very valuable content on there and you know, people expect a lot but they didn’t see the effort behind it. If I don’t feel up to it, I just don’t do it. At the moment I am working on my thesis and . I just really don’t have the capacity of doing additional research just to provide it for free on Instagram. So sometimes I might not post anything for a couple of days or even I don’t do a lot of stuff for a couple of weeks, But that’s fine, right? Because it should still be fun because I would never do that if I realized that. It’s not fun anymore. You will have other people who do a lot of meaningful things there. So I would say that my focus has shifted a bit towards doing these boards. Though, I post some other stuff, but I like the boards and I think that’s what I’m trying to focus on for the future also, because it’s fun and people like it and you can really tell that it makes some sort of positive impact on people, and that’s just great. 

Yeah, it’s really good. I think Nick Jonas has type one diabetes. I had heard his name in the diabetes community, and I was just fascinated to watch  the community to see the comments over the last few days. The comments that I read were quite negative towards him because he doesn’t say a lot about it  but he’s being paid to say some stuff by dexcom. 

I think one of the criticisms was that he basically said, “Diabetes doesn’t stop you from anything” so we are talking about non affordable insulin, non affordable. CGM s and all of that. Then if you have someone telling you, why do you make such a fuss? Then I understand that it should not be the message to go for the audience.. But I think probably the problem is that the people who do the commercials are also on the privileged side, you know? So I think it’s always the problem. If you don’t have anyone making decisions, who’s actually affected? But again I don’t know anything really about Nick Jonas and his diabetes engagement.

Yeah absolutely. Please tell us how many years since you have diabetes? 

It’s now 16.5 years since I have had diabetes. 

So during this period what are the standout experiences or moments that you’ve had. Let’s say when you were 13 years old and you were deciding to mismanage your diabetes momentarily. What do you think of the kind of  messages that you’ve picked up along the way to help people who maybe are trying to figure out how to manage their diabetes better?

I usually say this to people, especially younger people that  I know there are a lot of negative aspects of living with type one diabetes. It’s 24 hours a day, seven days a week where you have to manage a chronic disease, which isn’t always logical. I think you’re not managing your diabetes for anyone else but yourself so if you’re mismanaging it, no one will feel the consequences, but you will, and it’s not worth it. And I think that it’s possible to have a normal life with diabetes. 

If you have access to everything you need, like the basic things like medicines etc. then it’s possible that you can have a perfectly amazing life. However,  it takes effort and it takes time, and it’s not always easy, but in the end, it will be worth it. So, I try to keep that in mind as well that I’m doing it for myself and not for anyone else. Similarly, I don’t want to look back and realize that I screwed it up for myself because I was too lazy or I didn’t have the energy and doing all these right things will hopefully help me to have a long and happy life. 

Well, for me, it’s fascinating to ask myself the question that I’ve pondered in the last few years that “Would I prefer to have my life without diabetes?” and it’s actually hard for me to say I would prefer to have a life without diabetes because I’ve gotten so much into it that it’s actually hard for me to imagine myself saying that I wish I would not have diabetes. 

Yeah, that’s what I also try to tell people that  there are positive aspects as well so I try to focus on that. I don’t always have the right mindset to focus on it, which is perfectly fine. but I think if you’re active  on social media and if you have built an aspect of your life around it, where you have the disease on one side but you also have everything else on the other end then it automatically becomes easy to handle. I mean, you have this condition and you have everything positive to get out of it. So it’s a classic conundrum. 

You told us about your masters thesis so please tell us what you are studying? 

I’m doing a masters of science in strategic communication and I would love to combine it somehow with diabetes and I have plenty of ideas, and I will focus on that. 

That’s exciting. So there’s a massive overlap with your masters and what you’re doing on social media to some extent? Instagram has an element of what your masters is about. 

I am very much connected to research because I’ve studied two bachelor degrees and now  doing a master’s degree. I obviously like studying and research. So I think this is one of the reasons why I was also interested in doing research about diabetes. Sometimes I sit there and I look for hours to find some kind of research that I can use for my letter boards that everyone would enjoy, so you learn how to find research and you need it also at the university.  I think I definitely learned some stuff, which is valuable for my instagram. For example, I really like these clear messages so that’s definitely something I’ve learned during my studies. Nevertheless, I wouldn’t actually say that there is such a huge overlap. Maybe I’ve just not realized it myself or maybe other people have realized that more than me. 

We wish you good luck with your submission. So after that date, then you can breathe a little bit. 

Yes, I am hoping to not spend the summer in Sweden again and go somewhere else. Let’s see how the pandemic develops now but I will definitely take some months to breathe and I think that’s very well needed. I don’t know where I’ll be a year from now on, but I think that’s quite exciting. So I’m looking forward to it. 

Yeah, it’s fascinating. I haven’t spoken to any other Swedish people to get the take from them to understand their systems a bit more, but let’s save that for another time. I really appreciate you giving us some time today. Greta, Thank you so much. 

Thank you so much for inviting me. It’s very nice talking to you. It’s a good start to the day talking to you. So thank you. 

My pleasure. Have a good day