Katie's story: learning I'm not alone has helped with managing diabetes stress

• Was diagnosed with type 1 diabetes at the age of 13.
• Struggled with anxiety and panic attacks during sixth form while managing her diabetes.
• Has found that talking about the challenges of diabetes with others in the same situation has helped. 
• Support in getting a flash glucose monitor on prescription has made a big difference to her mental and physical wellbeing.

The hardest thing about living with diabetes is that no two days are the same. I can eat the same food and do the same exercise but one day my blood glucose levels will be mostly in range, the next day I’ll have horribly high blood glucose and the following day I’ll be having several hypos. 

Having diabetes is wearing. The hypos and high blood glucose levels often leave me feeling wiped out. I avoid late nights and I’m always the one who wants to leave a party first! 

I feel that I can’t try any harder to manage this condition that I already am, and yet I feel like I’m failing every single day. I’ve only managed to get an ‘in-range’ HbA1c test twice in my life and I don’t know how I did it – for the rest of the time my HbA1c is between 7-8%. I self-funded the Freestyle Libre for three years; I take regular blood tests, exercise every day and yet I still have diabetic retinopathy and I’m terrified of losing my sight due to type 1 (plus all the other complications that come with this condition). 

I feel so angry when other people (these people never have type 1 diabetes themselves) imply that this condition can be easily controlled and it’s just a case of following some rules as that’s simply not true. That kind of attitude just makes me want to give up trying. Why try and try and try if you still feel like a failure every time you get your HbA1C result?  

When I was in sixth form, I started to get daily panic attacks – I was terrified of going to sleep and dying from a hypo. I also began to doubt myself about whether I’d taken my long-acting insulin that day. I’d agonise for ages about it, knowing that missing a dose was dangerous, but double dosing was even more so. When I finished school I got a more supportive diabetes team, which really helped, but the anxiety hasn’t properly gone away as there’s no break from this condition, not even for a second. 

When I brought up the panic attacks in sixth form, the nurse looked surprised as though she didn’t know what to say in response, presuming it was school work and that it would stop after that.

My GP prescribed beta blockers and recommended counselling. I didn't tell my diabetes team about this as I found the whole thing embarrassing and they never asked about my emotional or mental health anyway. In fact, I only ever told the GP and my parents about the panic attacks and I didn't tell anyone that I was taking medication for anxiety or going for counselling. 

"I think things have changed now but 13 years ago no one seemed to talk about things like this so I felt like I couldn't tell anyone, which made it worse." 

I had counselling once a week for about 8-10 weeks, with the aim of stopping the panic attacks but it didn't particularly help as the root of the problem was diabetes, which the counsellor had little knowledge of. The counsellor definitely was not part of the diabetes team - there was no one like that involved in any diabetes team I've seen in the 18 years I've had this condition. 

Emotional support

Emotional support would have helped when I was first diagnosed. Not just at diagnosis actually - I think it should be available at all times. I’ve had Type 1 diabetes for 18 years and I make dozens of diabetes-related decisions every day, independently, so there’s a limit to how much practical and medical value I can get from my diabetes hospital team. What I really, really want is advice on how to deal with the psychological aspects of living with this condition. 

It’s scary and depressing that hypos are a normal part of my week and that, even if I did everything I could do be healthy, I still had a high risk of terrifying complications like sight loss. 

Finding out that other people with Type 1 diabetes struggle as much as I do really helped me. Before that I felt that I was the only one who getting regular hypos and high blood glucose. 

My partner of nine years really understands, I can rant about it and he appreciates how difficult it is. I’ve also found support in other people with diabetes, through Facebook groups, and have helped set up a group where I live. 

I moved diabetes teams a couple of times when I went to uni and there was more understanding about the fact that it’s a difficult condition to manage. At one point I was on the pump and they suggested a pump holiday, to try something else, as having something physically attached to you for 24 hours means you’re always aware of it. 

I was really impressed that Diabetes UK helped me to get the Freestyle Libre on prescription for flash glucose monitoring – that’s made a big difference to my mental and physical wellbeing. 

Having it gives me more peace of mind as I can look at a screen number of blood sugar to check if it’s going up or down or staying the same. It helps me to avoid hypos – sometimes when I’m anxious it mirrors the feeling of a hypo and so with the Libre I can check. 

Finding out that other people with Type 1 diabetes struggle as much as I do really helped me. Before that I felt that I was the only one who getting regular hypos and high blood glucose.

It meant so much to me that Diabetes UK asked for detailed feedback on their plans for the campaign from people with diabetes, including myself, and that they took our opinions on board.

Did you know that 7 out of 10 people have felt overwhelmed by the demands of living with diabetes? But most people can't get the emotional and mental health support they need. 

This has to change. If you agree, start by signing our petition.