Emma's story: how living with diabetes impacts my mental health

I was only 6 years old when I was diagnosed so much of the training and information was aimed at my mother, who was my primary caretaker. But the diabetes team that I worked with in Ohio was still incredibly supportive in giving me accessible and appropriate information, that helped me understand what was going on and how to be responsible for my health.

I was with this team until age 17, and I have to say that I don't think I would be as confident with my diabetes management today if it wasn't for them. I'm even friends with my former endocrinologist on Facebook now!

In 1998 I started off with injections of long-acting and short-acting insulin. I was using a blood glucose meter the size of my hand that took 60 seconds to work and a whole lot of blood to tell me my glucose level.

Then in the early 2000s I was fortunate to be given an insulin pump to help me manage my condition, and I've been using it ever since.

Even though I've still gone through periods in my life when I've not put in enough effort to look after myself and my diabetes, having a pump takes away so much of the worry and even basic calculations that you need to do on a daily basis.

The most challenging thing about having diabetes is that you can't ever switch it off or have a break. It requires constant decision making and awareness of everything that can affect your blood glucose. And that's right... EVERYTHING affects your blood glucose!

For me, it has often been frustrating that healthcare professionals don't seem to look at the big picture when trying to support you with your self-management. I've left so many endocrinologist appointments in tears because I felt that they hadn't really listened to what I was struggling with and the bottom line always seemed to be the numbers, rather than my overall well-being.

Impact on mental health

My mental health has definitely gone through ups and downs since my teens because of things that have happened in my life and how I've felt about my diabetes. I moved from the USA back to Finland in 2008, which was the start of things getting difficult. I was experiencing lots of seizures due to hypos at this point, which was scary and felt impossible to control. So, when I moved to Scotland in 2010 to attend uni, I naturally let my blood sugars slide up as I was busy enjoying uni life. 

It wasn’t until 2016 that I started opening up to my healthcare team about how badly my mental health had deteriorated because of my struggle with diabetes, and since then I have been given access to counselling on two different occasions. I was referred to first CBT and then a few years later a clinical psychologist by my diabetes healthcare team when they saw I was struggling with my self-care and overall wellbeing. I can't even begin to describe how beneficial this was for me in altering my mindset about my illness and learning to accept the things that I can and cannot control in relation to it. I continue to self-invest in counselling now whenever I feel like I need the extra support.

I took part in the type 1 and young programme a few years ago, which was the first time that I had met other young people with diabetes! It was amazing to feel so connected to these relative strangers just because of our shared diagnosis and similar struggles that we had been through. Whenever I can, I've attended the diabetes cross-party groups at Parliament to share my experiences in any way that I can to try to bring about necessary changes in how the government and healthcare professionals support individuals with type 1 diabetes. Being able to take part in things like this has given me a sense of pride in using my experiences to shape the future and hopefully improve the lives of other people with diabetes.

What do you wish you had known when you were first diagnosed?

Although my introduction to diabetes was very positive, the one thing I wish had been communicated to me once I moved into adult healthcare was that it's normal and okay for diabetes to affect your mental health. Because this was never talked about by healthcare professionals I kept my distress hidden for many years and didn't disclose it until I was quite unwell. 

Emma’s perspective

Normalising the fact that diabetes can have a huge impact on your mental health would have been something that I needed to hear. Because of my lived experience of mental ill health and type 1 diabetes, I'm now working towards a doctorate in counselling psychology.  I hope to provide the support that I was missing to other people. That's kind of my silver lining with my diabetes story. It's made me so passionate about working in the mental health sector to make change. 

We are campaigning to get better emotional help for people with diabetes. Join our It's Missing campaign today.