Linda

Age at interview: 24

Age at diagnosis: 19

Brief Outline: Linda was diagnosed five years ago at the age of nineteen. She is on two types of insulin Lantus and Novorapid. Lantus is the long-acting or background insulin that she injects once a day. Novorapid is a short acting one that she injects after meals. Before Lantus she used to use Levemir, but it was changed because she developed an intolerance to the preservative in it. Diet and exercise are an important part of her lifestyle. She feels she has learnt a great deal about her condition and how to manage it.

Background: Linda has a Master’s degree and works as a research assistant. She is single and lives in shared accommodation. Ethnic background: Scottish.

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Linda was diagnosed five years ago at the age of nineteen. Before diagnosis, she felt tired and needed to go to the toilet very frequently. Her father, who is a GP advised her to go and see a doctor to have her symptoms checked. She tested positive for diabetes type 1.

Linda, together with her parents attended her first hospital appointment at the diabetes clinic. Linda felt shocked by her diagnosis and by the fact that she would have to deal with something else in her life. The diabetes nurse she saw was diabetic herself and she helped Linda understand that diabetes can be managed. She was given her insulin regimen and lots of information and advice. Her father asked lots of questions and stressed the point that it was important for her to take good care of herself.

A week after her diagnosis, Linda went back to university. She was determined to carry on with her life alongside managing her diabetes. Linda was studying Sport Science and had a keen interest in nutrition and exercise. She thinks her studies helped her understand how to manage her condition. But she admits that controlling diabetes is a constant challenge because what you eat and do and how you feel physically and emotionally interferes with its management. She describes her experience as a learning curve.

Linda was put on long acting insulin; Levemir and short acting insulin; Novorapid. But she developed - what a diabetes specialist thought to be intolerant to the preservative added to Levemir. The areas where she was injecting swelled and became red and it was affecting the absorption of insulin. Her symptoms were irregular so it took time to identify the problem. Currently, she is on Lantus that is long acting insulin, but with a different preservative in it.

Diet and exercise are an important part of Linda’s life. She feels she has become quite attuned to what different combinations of food do to her and how it makes her feels and what influence it has on her blood sugar levels. Linda exercises frequently: she goes to her local gym three, four times a week and runs about three times a week. She finds that doing cardio, weight training and stretching have a good impact on her hormones and that it really helps to keep her blood sugars stable. Her mantra is ‘I am a healthy person and I have diabetes’.

Around six months ago Linda moved to another city for work and she has experienced difficulties when trying to access diabetes care. Due to shortages, she thinks that staff seem to prioritise on a case by case basis. She is not critical of the diabetes team and understands that there may be more people in need of their specialist care than her. Besides, she has learnt a great deal about her condition and how to manage it.

Social media has provided Linda with an important source of support and information. She regularly uses social media platforms like Twitter. She finds it easier to connect with other young people living with type 1 diabetes and sharing experiences when things go wrong or to share a joke and a laugh. Through Twitter, she has got in touch with people who later had become friends.

Linda has found it difficult to see the diabetes team in the city she moved to. When she needs advice she goes to her GP, phones her former diabetes nurses or goes online.

Well for me at the moment because I've only been in [city] for about six months, I don’t actually have a specialist team here. And that’s through actually like no personal choice of my own I’ve tried to get onto the system in the hospital but apparently they’ve been going through a lot of staffing issues and I’ve very, I’ve struggled to get an appointment with the kind of, cos mainly the teams are made up of diabetic specialist nurses as opposed to doctors and it’s been very difficult to contact them, they do have some telephone numbers which I’ve left multiple messages on previously but they kind of have, at the moment I think they’re just struggling so I think, you know, they prioritise loads of different things which is fine. And so in that sense I don’t actually have someone I can just like call up. Whereas back in [city] cos I was there for a longer period of time I had some very good diabetic nurses that I had their personal telephone numbers, I felt very happy to call up any of their different numbers ask for advice, all those kind of things. So I think it’s got a lot to do with how long you’re in a place and, and yes so from that point of view cos l’ve not been here for that long I’ve not really embedded myself into the system and been seen by different people which I think can happen, so.

So if you have a problem you go to your GP?

Yes, yes well I go to my GP if it’s kind of like the last port of call for me it’s mainly online that I get kind of information and advice and support and those kinds of things and I’ve got quite a lot of diabetic friends now so, so I’ve always got someone I can text and like say 1. how they’re doing but also maybe if I need some advice or a little bit of encouragement or whatever. But yeh if it's actually going to be medically related then yeh it would be my GP I’d go to first.

Okay and how do you feel being in a new city and not having a care team in place? How long have you been here? 

Six months. I don’t feel great about it to be honest. In the sense of I’ve had, there’s been an appointment that I was invited to but that’s not until the end of March and it’s kind of like I think they’re just, they’re going through a bit of a tough time where people are kind of slipping through the system which think is, you know, it’s understandable but also a shame at the same time because I’m sure they’ll be kind of worse off people than me that need help kind of a bit more rapidly but I think it’s something that potentially that, you know would get better the longer that you are in a place. So I’m not, you know, I’m not like oh you need to give mean appointment [laughter] you know, I’m not hounding them which maybe some people would, I’m not sure.

Linda felt that by the time she was offered a place in a DAFNE course she had already got the knowledge and confidence she needed to manage her diabetes.

When I was first diagnosed they talked about the Daphne courses and I would, you know, be put on the register but it was a very long waiting list and so by the time it came, it was kind of eight to ten months later that, you know, a spot became available and by that point I’d kind of, I felt like I knew what I was doing so it was like a bit irrelevant and potentially that was because I already had a solid basis in carbohydrate protein fats and those kinds of things so I didn’t feel like I needed to go and be told to eat like 20 grams of carbohydrates or whatever. But I guess yeh like from my point of view I felt I was doing fine. I’d got into my own routine so I didn’t feel like I really needed to go to a course to be told that.

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

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. 

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

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.