What would you change about your diabetes diagnosis?

Mine was almost 22 years ago, but much is still fresh in my mind. While there is a lot I am eternally grateful for, such as the speed and accuracy of diagnosis, and the way I was easily able to access specialist care, there are things that I wish were different.

One of those things is the line-up of HCPs that was offered to me. Making sure I knew the basics of daily diabetes management, the importance of knowing how many carbs I was eating, and the impact of activity, were, of course, critically important to learn before I was sent on my way. But diabetes was presented to me with this very one-dimensional approach. It was all about the magic carb/insulin/activity equation. Get that right and all would be relatively simple.

I had the relevant HCPs that could help me get that equation right – the endocrinologist, the diabetes educator and the dietitian. This was the holy trinity of diabetes care, I was told. This was the team that had diabetes knowledge to share.

And perhaps, if I’d been able to keep diabetes all about numbers, that trio would have been enough. Alas, it didn’t take long for this new-to-me medical condition to move to my head. No one mentioned the anxiety and fear that started to accompany the distress that was due to not being able to meet any of the targets I’d been set, and feeling overwhelmed by just how much diabetes there was to do. Or the disordered eating that may creep into my thinking because of this sudden focus on food in a different way. Or the crippling fear of complications that was keeping me awake at night.

I wish a version of these words had been said to me: ‘Diabetes is not easy. You can do this, but it is not easy. But we are here to help you. And endocrinologist and educator can help you with the practical side of diabetes. Food questions can go through your dietitian. We have an arsenal of allied health professionals to think about when it comes to doing all we can to reduce the risk of diabetes-related complications. And if you ever feel that you are becoming overwhelmed or anxious or distressed, if you ever want someone to talk with someone about how you are feeling to work through what’s going on outside the clinical aspects of diabetes, we have someone here for that too. It is perfectly, perfectly normal for you to feel all of those things. It is also perfectly normal for you to not feel them! We can help with whatever you need.’

Planting that seed would have made those first few years – those years before I found an endocrinologist who did say those words to me – so very, very different. I may not have understood why I might need, or rather want, to see a psychologist straight away – I didn’t understand what diabetes was, let alone how it was going to impact on my emotional wellbeing – but I wish that I had known from the very beginning that I had easy access to a one if and when I needed it. And that it was perfectly understandable if I did.

While I believe that GPs, endocrinologists and educators all have a role to play in talking about emotional wellbeing, they are not experts in this area. Having our diabetes HCPs acknowledge the high mental burden diabetes places on us is reassuring, but they may not be equipped with the strategies to help us lighten that load. But a psychologist can – especially one that works with people living with diabetes or other chronic health conditions. Plus, I repeatedly see HCPs say that they don’t have time as it is to ask about mental wellbeing, because there is already so much to do in the allotted appointment time.

Here’s the thing: so, so many people with diabetes are not reaching targets. Now, while I don’t agree with measuring diabetes success on numbers, that is still the way that it is done in many settings. And with that in mind, so many of us are above recommended glucose levels and our A1cs don’t even closely resemble what guidelines tell us to aim for. Clearly what we are doing now isn’t working, in fact, I’ll be so bold as to suggest that the current standard HCP line up is not necessarily best for PWD. Would adding a psychologist to the mix help? Would the expertise a psychologist can offer to help us learn how to address behaviour change, distress, anxiety result in not only feeling better about diabetes overall, but also improve those other measures?

I am not for a second suggesting that everyone with diabetes should have to see a psychologist. I don’t think that PWD should have to see any HCP they don’t believe is helping. But I do believe that we should be able to access a psychologist as easily and readily as we can any other diabetes HCP. Psychologists should be integral in multidisciplinary teams in diabetes clinics in the same way that educators, dietitians and endocrinologists are.

In my experience, it wasn’t until I started working with a psychologist that I got any benefit from seeing the rest of the diabetes team. Go check out the hashtag #DiabetesPsychologyMatters for some more commentary on this from PWD, psychologists and clinicians. It’s already gaining momentum, but I think it’s time that it really took off…