Patient stories

The support I waited 22 years for: how T1DE has supported my mental and physical aspects of my diabetes care

Trigger warning: this article references self harm and disordered eating.

Hannah is a 27-year-old and has had type 1 diabetes for the majority of her life. In 2022, Hannah was referred to our Type 1 Diabetes and Disordered Eating (T1DE) Service, where she started to receive the mental health support she needed for her diabetes.

I was diagnosed with type 1 diabetes at 18 months. Luckily, my childminder started to see the symptoms and noticed that I constantly needed a drink. As my mum's sister also has diabetes, they saw the signs, and it was picked up pretty quickly.

Around 7 years old, I was given an insulin pump, and I remember being one of the youngest people at the time to have one. There were a few other people in school who had diabetes, but they used injections, so I was hyper aware of having medical equipment on me and I think that paved for the way for me always being conscious of my diabetes and how it controls all aspects of my life.

With diabetes, I don't think people understand the restriction it brings. I have to consciously watch what I can eat and can't eat. Even during school, I had to have a parent with me on trips or in secondary school, I couldn't go on over night trips. Even though I had a great group of friends and fitted in, I still felt like I was different as I couldn't do the same things as everyone else.

Growing up, there wasn't a lot of media presence either. Now-a-days, you see lots of people on TV with medical devices and openly talking about their disabilities, but for me, my insulin pump was something that really stood out. It was stigmatised.

After a struggle with self harm and negative patterns of behaviour throughout early childhood to university, Hannah finally decided it was time to talk to someone.

Dealing with a long-term medical condition had a massive impact on me and my mental health. I felt abnormal with my equipment on show; I always had to monitor what I did; I always had to plan ahead. How I treated my own body was the one thing I could control. I used to deal with everything by myself, which led me to self harm.

I remember I was 12 or 13, and I was having a vaccination. The nurse noticed marks on my arm, but I downplayed them, and it was left at that. Now if that was pointed at, school staff would be alerted straight away, and the child would be supported. As nothing came from it, I carried on using negative behaviours to cope on my own.

When I went to university, I spoke to my doctor about feelings of anxiety and stress and was referred to 6 sessions of cognitive behavioural therapy (CBT). That was okay, but it was very pause and fix (if I was feeling anxious, I should take a moment to breath) and didn't address the root cause of my problems. The counsellor was very dismissive too - when I would try to raise concerns about my body image, she brushed over them as 'I wasn't fat, so why would I be worrying about those things'. I didn't speak to anyone again then until after I'd graduated.

In 2022, after opening up to her diabetes nurse at the time, Hannah was referred to our T1DE Service and has accessed the service for the last 3 years. With a holistic approach to care, the service has helped her to overcome some her 'black and white' thinking and support her to have more freedom with diabetes and life.

I initially had an assessment for mental health support. I knew what I needed to be doing and how to manage my diabetes, but I had gotten to the point where I just couldn't mentally bring myself to do those things and I needed help. Once I'd started speaking to a therapist and my mental health was improving, the team introduced support from a diet and physical health point of view, which was great, as it didn't feel overwhelming.

It was also really beneficial to have a diabetes nurse within the service - not only did it mean I saw familiar faces who have always looked after my care when I've had check ups at Warwick hospital, but having expert staff who know how to support mental and physical health means the service has given me a holistic approach to my care.

Since being referred to T1DE, I feel listened to, supported and know that the way I feel matters. Looking back now, the other support I had was very generic. At T1DE, it is really person centred and I don't just feel like another patient on their caseload. The staff have taken the time to get to know me on a personal level, and that's really made a huge difference. The team know who I am, what activities I do, and my treatment is based around those things. The service is just brilliant. Even the staff on reception take the time to know you - they're always welcoming and make me feel comfortable from the moment I walk in the door.

I've learnt a lot with the service - how to manage spikes in my blood sugar and what can happen if I don't properly manage my diabetes. I used to think if I started out the day with high blood sugar, it wasn't going to get better so what's the point in managing my diabetes on that day, but that was very black and white thinking, and the service has helped me reduce those more negative thoughts patterns. I finally have more food freedom and so feel like I have more freedom in life.

It's nice to see how far I've come. I still struggle with my body image, and my diabetes management still has peaks and troughs, but the extremes have improved. I feel like I can finally take the mask off, and am more vocal in all aspects of my life. I've always struggled sharing my emotions and thoughts, but I found that I can share now with my family and my partner and that's a really good thing. Since using T1DE, all physical self harm has also stopped, as I've learned other coping mechanisms to help manage how I feel.

I think I'm very lucky that that the service links directly to my hospital, I know others don't have that, but having the dedicated mental health support has had a huge impact on my life and the way I manage my diabetes. It took 22 years to be asked how diabetes was affecting my mental health, rather than just my physical health. It would have been great to be asked how my life was being affected, rather than just how my body was. A lot of people with diabetes end up having eating disorders, as there's so much focus on controlling food, but T1DE has been invaluable in bridging the gap between physical and mental health and ensuring I can get support for all aspects of life.