Yesterday, I gave a talk about language and stigma, and one of the questions I was asked focused on stigma within the diabetes community. I’ve had this post sitting in my ‘unpublished’ folder for months now, and decided that today was the day to publish it. I’m dedicating it to all my friends with type 2 diabetes.

There is a photo of me from 2011. I am standing in my office at work, wearing a bright red t-shirt. I’m staring at the camera, my eyebrows raised, a smirk on my face. My fingers are pointing to the words printed across the front of the t-shirt: Type 1 diabetes. The real diabetes. 

At the time, I was running a program that was exclusively about developing and running programs and activities for people with type 1 diabetes. It remains one of the things I’m most proud about in my career, because at the time, what was available to people living with or affected by type 1 diabetes was really, really limited.

At its peak, our program ran over 20 events across the state in both the city and rural areas, including diabetes technology expos that featured all the latest and greatest in Dtech; a diabetes and pregnancy program; we published a monthly type 1 diabetes-specific e-newsletter; established a program of peer support groups for people affected by type 1 diabetes; and also included in the program were camps for kids with diabetes. We put type 1 diabetes on the map as a program area that needed special attention, resources, funding and acknowledgement. The program was entirely ‘user-led’ meaning that everything we did came from feedback from the community, and many of us in the team were living with diabetes ourselves. Many of the things I see these days in the diabetes community are activities we first did fifteen years ago.

On top of the community engagement and events we were doing, the type 1 focus meant that we were now demanding attention in the policy and advocacy space. The specific needs that were relevant to people with type 1 diabetes were being discussed separately, and that yielded some impressive results – improvements to and extension of the Carer Allowance for parents of kids with type 1 diabetes; funding of pump consumables on the NDSS; pathways to funding of digital technology solutions being on everyone’s radar. We had (and continue to have) wins because of this attention to type 1 diabetes. We started doing this eighteen years ago and are still pushing the agenda.

I have no qualms about the program we started being an exclusively type 1 diabetes program. At the time, the organisation was already doing lots for people with type 2, and my work was addressing a gap in our programs and services. I was employed as a response to feedback from people with type 1 diabetes who felt that the services offered where not relevant to them. So, by working closely with the community, we built something from the ground up that provided people with type 1 diabetes what they wanted.

When the photo I described at the opening of this post was taken, my head was exclusively working on type 1 diabetes activities. I thought the shirt was cute and fun, and that I looked cute and fun wearing it. And I knew that so many of the people with type 1 diabetes that I was working alongside would love it too. The response when I shared the photo on Facebook proved me right. I know how to play to an audience!

Today, I am horribly ashamed and embarrassed that I wore this shirt with such glee, and the attitude that I held towards people with type 2 diabetes. Because while I saw the t-shirt as a just a bit of fun, the truth underlying it was that I did believe that type 1 diabetes was the more serious, the more important, the more misunderstood, the more maligned, the more worthy condition. After all, we couldn’t have done anything to stop our diabetes, could we? We were completely blameless. How horrible I feel today even typing those words.

I deleted the photo from my Facebook a number of years ago, but I still have it saved. Any  time I stumble across it, I feel a rush of shame. I was going to share it with this post, but a wise friend counselled me against that idea, saying that it was likely that somehow it could be used out of context and against me. It will remain hidden for now, bundled up with that shame and disgust I rightfully feel when I see it.

So, when did things change for me?

Of course, it was when I started listening to people with type 2 diabetes. It was hearing about their challenges and the constant stigma they felt. It was hearing how they felt when they were misrepresented in the media, or by others who knew little about type 2. That was when I realised how hurtful the narrative surrounding type 2 diabetes was for many of the people actually living with it.

I’m ashamed to say that harmful narrative that I actually contributed to. I certainly hadn’t always behaved with intent, but some of the time – such as when wearing clothing that suggested that I had the ‘real’ type of diabetes – was deliberate. Calculated or not, my complete lack of knowledge about type 2 diabetes, and the challenges faced by those living with it, meant that I was very often stigmatising.

I knew I needed to change what I was saying. Whilst I still believed in the absolute philosophy of the program I was leading, and the necessity of it having a type 1 focus, I understood that I needed to reframe the way I spoke. And I needed to be accountable to what was going on around me in discussions about all types of diabetes. The commitment I had to calling out misinformation about type 1 diabetes could no longer be at the expense of type 2 diabetes.

I have said this a million times – no one has to advocate for any cause they don’t want to. No one has to take on something that they don’t have the time, energy or inclination to focus on. No one has to be an advocate for all types of diabetes. There are some absolutely brilliant people who hone their energies on issues surrounding only one type of diabetes because that is what they know and what they are passionate about, and all the power to them – especially when they do that by elevating their cause BUT NOT diminishing others.

For me, my focus is on a number of different things and some of them actually do remain specific to type 1 diabetes. Some span all types of diabetes. The difference these days is the way that I do it.

I am sorry to all my friends with type 2 diabetes who I misunderstood, misrepresented and stigmatised. I have no excuse for my behaviour, but I do own it. And I promise I will keep calling out anything that I see contributing to the narrative that I once was part of.

Postscript

I’m writing the next bit in bold, because a while ago I published a post suggesting that when correcting stigmatising comments in the media, we don’t necessarily need to specify type of diabetes, and it was somehow misconstrued to mean things that I did not actually say. The things in bold below? There are dozens of examples of me stating these exact things through my blog, talks I’ve given, other articles I have written. But here they are in one little place just so my position is super-dooper clear.

  • Of course, we need to know what type of diabetes we are living with. We have a right to know and understand our own body and what’s going on with it, and the implications of our type of diabetes. For example, autoimmune diabetes comes with a whole heap of other considerations such as AI clustering and what that can mean to other family members.
  • Of course, we can and should feel free to say ‘I have type x diabetes’ if we want to. We can identify and talk about our own diabetes any way we want to. No one has the right to tell us otherwise. (Now I want to have ‘type x diabetes’ because that sounds all cool and mysterious and as though it could be the starting point of a disaster movie about world domination.)
  • Of course, there are some groups of people who really do need to fully, completely, utterly, absolutely understand the different types of diabetes and what they mean. For example – HCPs should know, policy makers should understand (to name just a couple of groups).
  • Of course, we should know the best management on offer for our own type of diabetes and be clear about what we are doing/using ourselves.
  • Of course, we should know that people diagnosed with type 1 diabetes need insulin and there is no other choice.
  • Of course, we should look at outcomes for all types of diabetes and see what measures need to be taken to improve them – and those measures will most likely be different for different types of diabetes.