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Diabetes type 1 (young people)

Online discussion groups and blogs

Online discussion groups and blogs seem to be widely used by young people with type1 diabetes. Young people looked online for information and support at different stages of having type1 diabetes. Some turned to social media from the time of their diagnosis onward while others started to search for online information years later.
 

Linda says that until recently she wasn’t ready to disclose her diagnosis online but now she feels connected to those she ‘meets’ on Twitter

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Age at interview: 24
Sex: Female
Age at diagnosis: 19
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Well it’s quite a recent thing for me actually when I was first diagnosed I was completely oblivious to what was, what support was online. I knew there was information about diabetes online but I almost just didn’t feel like, you know, I could connect with other people with Type 1 because it was just a bit like oh this is my thing I don’t want to, I didn’t really want to like broadcast it. Whereas at the same time, no not the same time, like now I’m very active on like Twitter and those like social media platforms. Just in the sense of connecting with other Type 1 diabetics and like having a bit of a joke about things or if things aren't going so well or, you know, it’s a very, it’s, with everything if you find someone that has something the same as you, you automatically connect with them in a way that no one else can understand. And so from that side of things I find it great, you know, you can talk to somebody immediately not just one person there’s multiple people there at your disposal that have either gone through the same thing or are just very supportive about it and understanding and can appreciate that it’s not, that it is a struggle sometimes. I’m not saying it’s a struggle all the time but it’s, you can’t beat yourself up very heavily and to have that avenue of you can just either rant about something or you can say if things are going great or whatever you’ve got those people there which I really enjoy. 
 

After her diagnosis, Katie became active on online discussion groups but now she describes herself as an ‘observant’. She follows Diabetes UK on Instagram.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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And when did you start using social media? How did it come about?

I don’t really know. I think I started using it quite soon after I got diagnosed. I think that was one of the first things I did on Facebook. I joined a group of people that had been diagnosed and I joined the Diabetes UK website and JDRF. I signed up with JDRF as a Type 1 ambassador. I think everyone can do it. And then you get information packs around. And I just kind of started talking to people through that. And I didn’t necessarily get overly involved but it was nice to actually read other people’s comments as well because you can get a lot of information from that rather than necessarily having to give your own. And it was nice to see what other people have got in terms of their treatment and how they coped with the condition.

Were you posting questions?

I did to start with but I now kind of act more of an observer and usually get a lot of information from that which is quite nice because a lot of people have already asked the same question that you want to ask and it makes you feel as if you’re not alone if you’ve got one particular question. So it is quite nice to have things like that.

Ok. So that’ could you say has been another source of information?

What using social media? Yeah definitely it’s been quite good because you can access information really easily now. There are lots of different forums and things like that that have all the information on so it’s quite nice.

Ok. And so you have a Facebook, you’re part of a Facebook group? And is that an open group or?

Yeah it’s completely open, anyone can join it.  I think a lot of them are which is good because you can just access everything.

Ok. And also Twitter?

I don’t have Twitter. But I follow the Diabetes UK on Instagram and things like that as well and they just post photos and updates which is quite nice to be able to follow the events that go on as well. So actually it’s the Diabetes Week and things like that.
Young people we talked to knew of type1 diabetes charities such as Diabetes UK and Juvenile Diabetes Research Foundation (JDRF), and regularly looked at their websites and followed their activities and events on their social media accounts such as Twitter, Instagram and Facebook. Several young people have fundraised for such charities by organising events in their school, university or community or by participating in sport events. In addition, a few like Katie and Lydia became charity ‘ambassadors’ to help raise awareness of type1 diabetes and Robert volunteers in a research committee that review type1 diabetes projects.
 
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Robert is a member of a closed Facebook group and post sometimes but he is more active in a committee that reviews type1 diabetes projects.

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Age at interview: 21
Sex: Male
Age at diagnosis: 20
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Do you have a Facebook group?

Yeah so we’ve got a Facebook group where we all link in. It’s been a bit dormant for a while but we probably should get it up, and get it up and running again but if we ever have any issues then we’ll put post on there and we chat about stuff or even if we just see a funny diabetes-related picture we’ll just post it and have a laugh together. But like for example I used it because I just had a hypo in the middle of the night. I woke up and corrected it and got something to eat. So good sign that I’ve got hypo awareness. But yeah sort of felt like death the next day. I just felt horrible.

So I posted on Facebook in this group of us and said, “Look is this normal? Do you guys feel really crap the next day as well?” And they sort of said, “Yeah if you have a hypo, in the middle of the night it takes a full day to get over it at least.” So it’s good to have that and sort of talk to them.

Ok and are you in touch with other support groups or organisations?

So I, [sigh] I’m in touch with Diabetes UK quite a lot because I am, I volunteer for them so I actively seek to join them and it’s on a, an Advisory Panel where they ask people with diabetes Type 1 and Type 2 to give feedback on sort of projects that have been put forward to them requesting funding. So we all get together I think it’s about 3, 4 times a year. We review all the projects. We rank them as like whether we think it’s something that Diabetes UK should fund whether it’s a lower or high priority. And obviously that keeps me really in tune with Diabetes UK quite a lot because they keep sending material to me and I read them and review it. We send it back and we meet up in London and have a big meeting and go through all the projects. So I link in with them quite a lot.

Have you posted in other groups?

Just, just the one closed group. I haven’t really posted in other groups. Just sort of yeah mainly between us if there is any like diabetes related issues we’ll sort of post, I sort of post. And it’s something now, we discuss it there. So we haven’t really been on it much recently. Occasionally it’s not even just for a, issues it’s just to report if we see something funny that’s a misconception of diabetes we’ll post it and have a laugh about it. But it’s just sort of good to stay in touch and know the people there if you ever want to get in touch.
Some people looked online to find out about other people’s experiences of living with type 1 diabetes, to learn about treatments and how to cope with the ‘hurdles’ of managing it. For Linda, finding out about other people’s experiences of diabetes has helped her normalise her own experience while for Sophie it has provided the encouragement she needed to improve the management of her diabetes. Lydia said that social media provides a community based on familiarity because ‘everybody is going through the same problems’.
 

It wasn’t until she went on Instagram to find out about continuous glucose monitoring that she realised how much information and advice there was online.

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Age at interview: 24
Sex: Female
Age at diagnosis: 12
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Why did you start it?

I think because |I decided that I wanted to get my control better. And I started looking up these continuous glucose monitors but I didn’t really know much about them. So I actually just went on Instagram I think it was one Sunday morning or something and typed in the hash tag diabetes or Type 1 diabetes. And all of these pictures came. I’d never done it ever and all of these pictures came up of all these different things. And I was just like wow there’s so much on here. And I found all these accounts where people were sort of doing pictures of what they do every day with their diabetes and their CGMs and the different ones and I just thought like it was really great and I’d never seen anything like it. So I spent a few weeks sort of following different accounts and chatting to different people and making comments and I just thought, “I’m going to do this. I’m going to try it, why not?” And I just started it. And I think it actually motivates you as well cos you’re, you’re thinking about your diabetes more and your choices more. And, you know, if you have a bad day you can be like, “My numbers are really bad like is there any of you had something similar to this?” And someone always will have [laugh] and they will comment. So yeah it’s really good like that. So yeah I kind of just started it on a whim in March and I’ve just got a lot from it so I’ve really enjoyed it and just carried on doing it.

Ok so it’s this constant flow of information? 

Yeah every day, yeah it’s really good. I’m on it all the time. I love it and I chat to people quite a lot on it and, you know, I had someone the other day who was telling me about a pump that I’m interested in and how she’s, how she’s changed to it and how much she loves it and where she likes to wear it and what’s best for her and, you know, does she have any problems with it or would she recommend something else. And it’s nice to hear that from someone who’s actually had it. And you know has also been through what I’ve been through. She’s been on injections before so she can honestly say, “Yeah actually I prefer the pump for this, this and this.” Or, “I prefer injections for this, this and this.” Whereas a doctor as great as it is  and as much advice as they can give you they haven’t, they don’t have diabetes or they don’t experience it and they don’t, you know, they don’t have these numbers that swing up and down every day for no reason or, I don’t know, say things with a pump if your tubing comes un-, if your pump falls off or your tubing gets blocked, you know, it’s people who are experiencing that that can tell you what it’s like. It’s, you know, it’s easy, it’s better to have it I think from someone who’s actually going through it.
 

Sophie feels that she can relate to other people’s concerns and experiences because they are like her own experiences of living with type1 diabetes.

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Age at interview: 24
Sex: Female
Age at diagnosis: 12
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I started a blog as well. I don’t do that so much just because just quite busy with other things but again I follow a lot of other blogs now and read a lot of other stories which is really nice. You know again it’s relatable. I read one recently about sort of a work/diabetes balance and it’s nice to read again that someone else knows what it’s like because when you are working very long hours it’s very hard to make time or consider what your diet is and that you’ve had a good lunch, that you’ve had a good dinner when you’re still at the office at late hours you just want something quick or when you’ve got a lot of revision to do or a lot of work to do it’s very hard to prioritise your diabetes at times like that I find. And it’s nice to know that you’re not the only one feeling that way I guess. And see how other people cope with it. So again a lot of people say how preparation is key and if you make sure you make your lunch the night before then you’ve got it and you won’t, you won’t go and pig out on stuff that’s going to make your bloods go haywire just because it’s quick. So things like that that I haven’t really talked to people about before I guess I found online and stuff so it’s really good. 

And I guess it’s real life situations you know. Again things like alcohol or going out to eat with your friends or, I don’t know, going out to eat at someone’s house who’ve made, made you a lovely meal but it’s going to make your blood sugars go crazy. That’s not really the sort of stuff that books teach you or your doctor’s teach you. It’s kind of like real life situations that you’ve just got to go through and experience. So it’s nice to see that from people your age and stuff online so.

Yeah and the same with injections. You know I tried; I tried changing my Lantus to Levemir for a little bit just to see if that would help my control. And again there was loads of people that I could ask about it and, you know, my, my nurse said, “Oh at first just take it once a day.” And that wasn’t working for me and then a lot of people said, “Why don’t you split it? I split my dose at this time and this time.” So I tried that and that really helped. So in the end, in the end I changed back to Lantus because it didn’t actually. After a few weeks I was quite struggling with the Levermir and I just didn’t find it beneficial but the fact that I had people sort of guiding me who have been through it all and have tried it all themselves it’s really nice to hear that. And again like you said, it’s a constant flow. It’s not once a year, once every 6 months at the GP or the hospital. It’s, I could ask someone today or something, what, what do you suggest or what does anyone recommend or how do people find this situation. So yeah it’s really good.
Young people said that online discussion groups and blogs provide emotional support that is based on their shared experience. People have joined Facebook, Twitter or Instagram groups for people with type 1 diabetes to connect with others and hear about the ‘good’ and ‘bad’ bits of their experiences of managing type1 diabetes. Young people who didn’t know anyone else with diabetes found the online support helpful. It could be reassuring to know that other young people faced similar difficulties when managing diabetes.
 

Lydia says that living with diabetes 24/7 is difficult and that she feels supported by her family and her friends in the online community.

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Age at interview: 19
Sex: Female
Age at diagnosis: 12
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I don’t know in your case did you find anything difficult?

Yeah it is difficult because you live with it 24/7 and it’s not just like taking a tablet for another disease, I hate calling it ‘a disease’ but it is a disease. And yeah it’s not, it’s not an easy thing to live with. And living with it 24/7 quite a few people do end up with diabetes burn out because they are constantly thinking about their diabetes and then it will start to control their life. And if their blood sugars aren’t right it will spiral and they’ll find it quite difficult. So I think support is a really big thing with it, living with a chronic illness. I think that is one of the best things about having Type 1 is the support.

Support from your family, your?

Yeah from my family, from. I have Facebook friends from America that I’ve never met before who are Type 1 diabetic and because you’ve all got Type 1 diabetes you all have the same connection and you understand things at a much deeper level that people that Type 1 dia-, people without Type 1 diabetes don’t understand. So it’s brilliant.

Yes so I use Twitter on Facebook for my Type 1 diabetes. Like we have a massive group on Twitter called the Great British Diabetic Online Community and everybody on there will chat and they’ll be like, “Oh have you experience this?” And everybody will have experienced it and you think you’re the only one. So it’s brilliant to be able to have other people that have experienced the same things. And that’s why I started writing my blog because I didn’t want people to think that they were the only person who has been through this and ways to overcome it and just to show that every, everybody goes through the same thing and that they are not alone with it.

Ok so it’s, it’s virtual support isn’t it?

Yeah, yeah definitely.

When did you start kind of on Twitter and Facebook and?

[Mm] So for my first couple of years of diagnosis I didn’t know anybody else with Type 1 diabetes. And as I started to become more involved with the charity work and the awareness for Type 1 diabetes I met more people through Facebook. So and then through Twitter. So for the past 3 / 4 years I’ve engaged with loads and loads of people and that makes it so much easier to live with.
 

Linda says that diabetes is ‘unpredictable’ and that social media connects her with others who understand the difficulties of living with it.

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Age at interview: 24
Sex: Female
Age at diagnosis: 19
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And I think especially with things like Twitter I’ve actually like met people actively outside because of Twitter so I think from that like it's great because I now have their personal numbers and like we meet up and stuff so it’s like you have that bond with people which sounds funny because it’s through a chronic illness but I think anything that eases any kind of psychological thing about it as well is really beneficial.

I know a lot of, a lot of my diabetic friends write blogs I personally don’t write a blog but I know that they find that really emotionally like cathartic that they can just write down whatever they’re feeling and hope that someone else can gain from their experience as well and I think it’s just nice to share stories cos as I said before this thing is completely unpredictable you’ve know idea really kind of, obviously you hope to have good days but sometimes it’s just unexplainable so to have that avenue online where you can, you can just reach to somebody for support really quickly as well is good.
Young people use online groups and blogs differently and while some posted regularly on social media or wrote their own blogs, others used it less frequently and limit their use to reading others’ posts but they wrote little or not at all themselves. A few young people said that their online activity is limited to finding about particular issues or to a closed Facebook group made up of people who knew each other beforehand. Helping others and educating the public about the differences between type 1 and type 2 diabetes motivates young people to write blogs and on public forums.
 

Lydia’s blog provides information and support based on her own experiences such as travelling, insulin pump therapy and diabetes products.

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Age at interview: 19
Sex: Female
Age at diagnosis: 12
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Ok so I always educate people about Type 1 diabetes whenever I am around and about or I’m running it through my blog. I blog for JDRS sometimes to help reach a wider audience and tell them what I tell people from my blog as well. And sometimes I do speeches. So I’m doing a speech in [city] in a couple of months to show people that doing, having Type 1 diabetes isn’t anything to stop you living your life. So yeah it’s just raising awareness and showing people that Type 1 diabetes is different to Type 2.

And when you blog what, do you blog about different things, different experiences?

Yes so I blog about  last summer went Inter-railing and I blogged about how I managed my diabetes travelling around Europe and how I [ha] and how I experienced it at university even though again it was really difficult like my tips and tricks of how I got through that. And I also talk about different products. So I talk about the Libre (Continuous Glucose Monitoring) on there and about my insulin pump as well. So it’s just teaching other diabetics that might not have heard of these things a bit more or younger diabetics as well that you can actually go travelling and you can do things like that.

It’s more people being able to relate to what I’ve written about for the like emotional side and being able to. They ask me about travelling. They ask me more questions about travelling because quite a lot of people don’t get that information from anywhere. So I think having somebody who’s been and done it is more help than a nurse telling you the logistics of it.

And where did you get your information from?

I got a bit of information from my diabetes team. But going out and doing it you have to learn as you, as you go through like travelling you pick up advice that nobody could tell you because it’s each person to their own. Everybody is different.

But did you ask for advice on Facebook or on Twitter or?

I asked about the bags to keep my insulin cool on Facebook. And that’s where I got that advice from but with my alarms it was my diabetes team.
Problems with looking online for information and support were also mentioned. Linda said that you find all sort of things including ‘scary stories’. Lewis parents pointed out that some of the information found online could have an impact on younger teenagers like Lewis and particularly if it is posted by ‘famous’ or ‘influential’ people. They said that not everything people find and read online is based on facts and that sometimes you can receive conflicting advice. They think that there is a need to provide supervised online spaces to those in their early teens.
 

Lewis’ father talks about an online forum for younger teenagers and Lewis feels that an online space for siblings of those with diabetes is also a good idea.

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Age at interview: 12
Sex: Male
Age at diagnosis: 4
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Father: An online forum for people your age so you can chat together, talk together but obviously then with that adult supervision and keeping out anything that shouldn’t really be there which I think is a good idea. Because you do need filters in life really. So and obviously you know it’s difficult for us as adults to filter out all the rubbish that we see never mind say young impressionable children and young people.

Lewis: I think brothers and sisters as well they I think it would be good for them to talk to other people who’ve got older brothers or sisters with diabetes to talk so they know how to manage it. Like I know my sister especially she sometimes feels a bit left out because I might get most of the attention because of my diabetes. Whereas if she had somebody or my brother, somebody to talk to other children they can connect that was so they wouldn’t feel as left out cos they’d have other boys and girls whose brothers or sisters have got diabetes then without being left out they can talk to other people as well. So it’s not like just me talking to other people with diabetes they can talk to other people with brothers or sisters with diabetes which I think would be good.


Last reviewed December 2017.
Last updated December 2017.
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