From the inside

I don’t get to take part in the OzDoc tweet chats as frequently as I would like to anymore, but when I do, I know that I am guaranteed an hour of thoughtful and engaging discussion about real life with diabetes.

This week, I popped in a little late, but in plenty of time to catch a terrific chat a out diabetes stigma – from both within and outside the diabetes community.

Diabetes stigma is real. Have I experienced it? You bet.

Stigma is unsettling, and it comes from a place of ignorance. Is there any real animosity or vitriol? I like to think no, but it pains me that when there have been times of nastiness, it has come from within the community.

I can honestly say that I have never been stigmatised about my diabetes from anyone inside the diabetes community. But then, I have the type of diabetes that I didn’t cause myself. You know, the one that has nothing to do with the sorts of foods that I ate. The one that has nothing to do with me being overweight or inactive or lazy. I have the one that cute kids get – kids who are innocent and have done nothing to ask for this. And I have the tough one – the one that is the worst, the one that can cause death in an instant, the one that no one understands.

These are words that people from within the diabetes community have used when talking about type 2 diabetes. That’s right – by others living with (or living with a child with) diabetes. Perhaps it was in a discussion about the hopeless and insensitive comments made by some silly comedian; or perhaps in response to a diabetes report that doesn’t separate type 1 and type 2 diabetes.

And I am not the only one to have noticed this. The Walk With D campaign was set up because there was a need to acknowledge that … ‘Even within the diabetes community, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.’

There have been some studies that also reinforce the idea that there certainly is stigma from within the community.

The ACBRD has been researching diabetes stigma for a couple of years now, starting with a project looking at the stigma experienced by people with type 2 diabetes and following up with a similar study about people with type 1 diabetes.

The second study discussed the perpetuation of type 2 diabetes stigma by people with type 1 diabetes and it’s interesting reading. You can read the full article here, but here are just some of the findings:

• In general, participants expressed somewhat negative attitudes towards, and beliefs about, people with T2DM. This included stereotypes such as ‘lazy’, ‘fat’, ‘over-consume’, ‘sedentary’, ‘unfit’ and judgment about the intelligence and character of people with T2DM, and blame for ‘bringing it on themselves’.
• These attitudes and beliefs served to perpetuate, and give voice to, the stigma surrounding T2DM and drove an in-group/out-group (or ‘us vs them’) mentality.
• It was also evident that there was resentment among people with T1DM toward those with T2DM, which stemmed from two main factors: (1) the perception that people with T2DM are responsible for many of the negative connotations that surround diabetes, and (2) the perception that T2DM, as a largely preventable condition, attracts more attention and therefore gets more resources and support than T1DM.
• Some participants believed that T1DM was the ‘real’ or ‘serious’ type of diabetes, and was more worthy of research attention and investment of societal resources than T2DM.

That sounds pretty stigmatising to me.

Let me be clear about my position here – there are different types of diabetes and people living with each of those types of diabetes has the right to find support and healthcare that is relevant and specific to their diabetes. A young person living with type 1 diabetes is, of course, going to have different needs to an older adult living with type 2 diabetes.

There are many times that we need to clearly define the different types of diabetes as this is important when it comes to getting the right treatment, seeing the right HCPs and ensuring the person living with diabetes has the right information.

I am not saying that there shouldn’t be specialised and tailored services and activities available to people depending on what they need, or relevant to the type of diabetes they have. I built a program from the ground up that was very specific and targeted in its approach to being only about and for people with type 1 diabetes. I get it!

And you absolute bet that people with type 1 diabetes should have access to support and peer opportunities that are specific. I know that for me the sense of ‘me too’ comes most strongly when I am speaking with other people with T1, usually women around the same age, who are working and have the same sort of technology, caffeine and boot addiction as I do – sometimes there does need to be a ‘sacred space’ for us to discuss the issues that are particular to the challenges presented by our brand of diabetes. And finding the perfect pair of knee-highs.

What I am saying is that I know that the stigma comes from a variety of places. And I believe that we should be advocating for diabetes messaging to be positive and beneficial to people living with diabetes. The challenge of getting that message across to people in the general community who have no idea about diabetes is difficult to manage and sometimes it has not been executed particularly elegantly.

But I am a firm believer in the strength of community and the support that it can offer. And to me, the diabetes community means everyone affected by diabetes – everyone. Stigmatising anyone inside that community does a great disservice to us all.

DISCLAIMERS ALL OVER THE PLACE!!

The ACBRD is a partnership between Diabetes Victoria and Deakin University and until very recently, Diabetes Victoria employed me. Since the ACBRD was established (6 years ago) I have worked with foundation director, Professor Jane Speight and her team on a number of different projects.  

I have not received any funding from the ACBRD for my work with them. I just like to write about them because the work they do is very important and is changing the way that diabetes is perceived. And their work in diabetes and stigma is ground breaking. (Really! The Washington Post published this article in 2014, quoting Dr Jessica Browne from the ACBRD.)

Now, I just happen to share an office with the ACBRD. And this is on my office wall. I have found myself reading it quite a lot this week!

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