I am frequently the only non-health professional in meetings or on panels at conferences. I admit to it having taking me a number of years to completely feel that I belonged at the table. Imposter syndrome is real and despite my seeming (over) confidence, I often have to give myself a little pep talk reminding me that the PWD voice is the most important voice, that I have every right to be there, and that I should speak up.

At a recent meeting, I was speaking with a group of healthcare professionals about diabetes complications screening. There was a break in the formal part of the day, and as we stood around drinking our coffees, the first comment came that made me prickle. ‘Screening is available. People just need to stay in top of it.’

I took a deep breath. ‘Um, it’s not really as simple as that.’ I said. ‘You have made an assumption there that people know what the screenings are and how frequently they are recommended. That’s not really always the case. And there are a lot of factors as to why someone may not be up-to-date with their screenings.’

‘Such as?’ asked the person who made the original comment.

‘Really?’ I asked. ‘You need to ask that? There are so many.’ The group was looking at me, waiting for a response that, personally, I thought was a little redundant.

I took a deep breath. ‘Well, to start with, not everyone is in regular care and if they are not seeing someone regularly for their diabetes, they may not be up to date with screening. Also, a lot of people are terrified of diabetes-related complications and that may make them nervous about having the check done. If they don’t feel that they can approach the topic of how anxious they are feeling perhaps they decide that it is easier to simply not know. ‘

I was getting a lot of blank looks, so I did what I do in situations like that. I kept talking.

‘Also, there is a lot more to complications than… just complications… By that I mean that the way complications are communicated is fraught. Often there is a lot of judgement and stigma. People feel ashamed. They think it is their fault if they develop them because that’s the way it’s been framed to them. And of course we all know that’s not true.

The look I got from the others suggested that no, we don’t all know that to be true. So I kept going.

‘Plus…life gets in the way sometimes. Everyone falls behind with the things we perhaps know that we are meant to do regularly. Which reminds me,’ I continued in a moment of realisation, oversharing and far too much information for a group of people I don’t know. ‘I need a pap smear.’

I was about to say something else and then stopped myself, deciding I’d said enough.

‘But surely people need to know. So they can be treated. You all know that early diagnosis means better treatment, right? So why don’t you just stay on top of things. Isn’t that your responsibility to do that. If you find out you have retinopathy or something and you’ve missed five years of eye tests, you can really only blame yourself. A lot of people just don’t care or want to know. You do know that diabetes complications are serious, don’t you?’

I looked at the person who had just said that. Was he actually diabetesplaining diabetes complications to me? Was he diabetesplaining how people with diabetes feel about complications to me? Did he just diabetesplain what people with diabetes know?

I wasn’t sure where to begin. But tried to anyway.

‘Well, no. Not everyone necessarily knows that early diagnosis means better treatment and not everyone knows how frequently screening checks should happen. There is always so much to keep on top of when it comes to living with diabetes that sometimes things slip through to the keeper.

‘And sure, it’s may be my responsibility to keep on top of things, but I have a lot of other responsibilities. I mean, it’s your responsibility to do 30 minutes of exercise every day and eat five serves of veggies. Do you manage that every single day?

‘And blame is a really, really unhelpful word here. It suggests that someone wants to develop retinopathy and so they have wilfully ignored their eye checks. No one wants to develop diabetes complications. I can promise you that.’

‘And to your last point: Yes. I know diabetes complications are serious. How much do I know this? It keeps me awake at night. I actually feel terror about developing them because I am scared that I won’t know how to cope. Before an eye screening and while waiting for my ophthalmologist to tell me what he sees at the back of my eyes, I hold my breath until I hear him tell me that there is no retinopathy. When I have my kidney function checked, I am on tenterhooks until I hear from my endocrinologist with the results…

‘Really – there is nothing you can say that will increase my awareness of how serious diabetes complications are. I know it. I live it. I breathe it. Every single day. That’s what people with diabetes do.’

Thankfully, we were being called back into our meeting and the conversation came to a slightly awkward conclusion.

Maybe, because of all the work I’ve been doing around diabetes complications recently, I’m on high alert, but it seems that I have had more than my usual share of similar conversations recently. And each time I am left with a sour taste in my mouth. I also feel disappointed, sad, tired and a little defeated that there are still so many misconceptions bandied about, continuing and feeding the stigma associated with diabetes complications.

But every single one of these encounters strengthens my resolve to reframe the way we talk about diabetes complications. We need to bring discussions into the open. We need people who have been diagnosed to be given an opportunity to talk about their experiences, so that their stories are heard loud and clear. We need to call out anyone who perpetuates stigma, judgement and blame around complications.

Diabetes complications are a reality for people living with diabetes – either because we are living with them or we are constantly thinking about them. We don’t need HCPs to tell us how to feel about them. We need HCPs to provide information and support us.