Recently, I was tagged in a tweet that asked for my thoughts on a discussion that was already in progress, and had started with this tweet from diabetes consultant Pratik Choudhary:

(Click for original tweet and to read discussion)

It’s a long thread (that seems to still be going), but it is worth a read to see some different perspectives and thoughts on the role of psychologists as part of the diabetes multi-disciplinary team.

I think that Pratik’s original tweet is right in that diabetes clinicians have a role to play in acknowledging diabetes-related distress and working with PWD by asking the right questions.

But just asking isn’t enough and rarely actually gets to the root of it all. Because unless we are asked and can understand why we are behaving a certain way, we don’t know how to stop it. Why do we feel guilty? Why do we feel that we need to be perfect in the first place? Why do we base so much of our own worth on numbers (TIR or A1c)?

But in the real world, I don’t think these questions are being asked, and there are myriad reasons that’s the case. Some clinicians wouldn’t have a clue what or how to ask. And then if they did, they’d struggle to know what to do with the answers. Only recently, I heard of a diabetes educator say ‘You just have to do it’ to a PWD who had opened up and said they were really not checking their glucose levels because they felt ‘over’ diabetes and simply unable to manage its significant daily tasks.

I nodded in recognition when I heard this story because that was me for the first three and a half years of living with diabetes.

Also, sometimes PWD feel too ashamed and guilty to admit the distress they’re experiencing to their HCP, instead promising to do better and check more and respond accordingly.  But do nothing of the sort.

That was me, too.

In the limited time we get with our diabetes HCPs, we seem to have a focus on numbers and basal rates and tweaking X and Y to make Z better. We are in diabetes mode because we know those minutes are precious and diabetes is what we are meant to be focusing on – even though diabetes may be so far down our list of concerns we sometimes (try to) forget we even have it.

Yeah. That has been me too.

Even though I have an endocrinologist who asks the right questions, doesn’t fill those silences where I am looking for the right words, is encouraging and supportive and never judgemental, and understands that diabetes-related distress can be paralysing, she was not who I needed to get through those times. I love that she knew that.

She also knew that no matter how many SMART goals we set together, and even if I said that I would be able to do them because I could see they were achievable and completely not unrealistic, until I had a mental health professional work with me there was no way I was going to do them.

One of the first things she did when I started seeing her seventeen and a half years ago was refer me to a psychologist. The guilt that I was feeling about the imperfect numbers – or the lack of imperfect numbers because I was barely checking them, was steeped in a complex and convoluted mess. I needed a mental health professional whose expertise was to help guide me through it all and show me how to get things sorted.

THAT was what I needed at that point in my diabetes life…and numerous other times since then too.

For me, there has always a lot to the cause behind my diabetes-related distress, and speaking with many of my peers, they would say the same thing. I didn’t understand that it was okay for me to grieve my life before diabetes. I could remember it well – the days of not needing to think diabetes, breathe diabetes, sleep diabetes. My life was different post-diagnosis, but the recurring messages I’d heard was that diabetes wouldn’t stop me and I should just get on with life.

Well, I have done that. But that doesn’t mean I didn’t need time to mourn the days where I didn’t do all that. Having someone help me where diabetes now fit in my life was essential to clearing a path for me to actually make diabetes happen. And for the record – I’ve needed counsel with this several times because diabetes’ place does change around depending on other things in my life.

So where does a psychologist fit in the diabetes health professional equation?

For me, it must be as part of any multidisciplinary team.

I’m not sure that the day I was diagnosed would have been the right time for me to have an appointment with a psychologist (but let’s be honest, it would have been no less helpful that the dietitian and her rubber food moulds), but I certainly do wish that I’d know that having someone to talk about my mental health was a sensible thing for when I  needed it, and given clear directions about how to go about getting an appointment. I was told about the eye specialists and podiatrists that would be part of my future team, but no one thought to mention a mental health professional.

It shouldn’t have taken almost four years – four very difficult years in a lot of ways.

Over the years, seeing a psychologist has helped me with my diabetes management enormously. Those times when diabetes has terrified me to the point of paralysis and inactivity, the times where I wanted to blame diabetes for other things going on (because it is there and I generally don’t like it so it’s convenient to point my finger at it!), the times when the uncertainty of diabetes and the fear of what lies ahead, or the times when life overall has felt just too big and scary and diabetes just doesn’t get a look in … I have benefited from having a mental health professional to work with. In fact, I doubt that I would see diabetes is the way I do now without that support.

There is so much more to managing diabetes than simply doing diabetes. And there is more to diabetes distress than just acknowledging that it is there. Having diabetes specialists who understand about distress is valuable. But I really do think that understanding it ourselves, being able to identify warning signs, and developing sustainable strategies to deal with it any time it comes back needs the expertise of a psychologist.

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