There are a lot of words that get thrown around the diabetes space to describe people involved in advocacy and support. These include (patient) leader, influencer, advocate, supporter… the list goes on. Some people prefer certain terms; others don’t. Some people don’t want to be labelled. 

I had no idea the word ‘advocate’ was a loaded word in some places. I sprinkle it around like glitter – because I see it as a term that typically describes people doing really great things – and not just in diabetes. 

It’s a word I’m comfortable with for myself.

It’s a word that I connected with others when I first started volunteering in diabetes – before I was working in it – because I could see that there were people with diabetes making a real difference to the lives of others with the condition. 

It’s a word that I attach to people standing up, showing up and being counted. I asked on my FB page about the word, and someone said they like it because it not only refers to the person, but also the actions they are taking (thanks for that gem, Cathy). 

But while it’s a word that I feel relaxed with, it doesn’t seem to be sit all that comfortably with other diabetes folks around the globe. (Which is, of course, fine. We can use whatever words we want to describe ourselves and what we do.)

I’m not sure if it is a cultural thing, or if it is just a preference. I’ve learnt that some languages don’t have a word that literally translates to advocate, but someone from Sweden told me she uses the English word, because it most adequately describes what she does. And in some places, people are very reluctant to use the word to describe themselves. After I asked about it, a number of people contacted me privately to say that they would like to use it for themselves, but they are worried about what others may think. Interestingly, they were all from the same part of the world. 

Last month, I was an invited speaker at an event for people with diabetes in South Africa, and I was asked to speak about how the DOC has been a source of support for me in my years with diabetes. The event was titled Diabetes Influencers Summit. Now THAT’S a word I’m NOT comfortable with! I spent the first few minutes of my talk explaining why I’m prickly about the word and how I see what I do as advocacy, not influencing, and that I consider myself an advocate, not an influencer. 

In my mind – and of course this is just my own assessment – influencers are building a brand for themselves, while advocates are more focussed on community. There is NOTHING wrong with building a brand – we all do it to a degree. But the advocates that I met and followed when I first started hanging out in the DOC were the ones that were truly all about community. They’re the ones I engage with now.

I don’t know any advocates who have made a squillion from their advocacy work. I don’t do sponsored posts here (or on any other of my socials). If I have been given product and then choose to write about it, I mention that in my wordy disclosure statements at the end of posts (and frequently throughout them as well), but I have never received money for what I have written, even though I am contacted almost daily with offers. I am a freelance writer, so I get paid to write elsewhere, but that’s my side hustle, writing is my job, and I should be paid for that. 

No one has to call themselves an advocate – because of course that’s fine! – but I am saddened when those of us who do use the word are criticised, or considered to be ‘above our station’. (Ugh – just writing that makes me feel sick. Aussies baulk at class systems.) 

Being an advocate doesn’t mean that I think I speak for others. I have never heard another diabetes advocate share their story with the message that they are representative of everyone. It also doesn’t mean that the issues that are important to me MUST be important to others – or that they’re the most important issues. I like to think that many of those issues that I’ve spent 20 years advocating for – access to healthcare, drugs and technology; PWD being recognised as experts in our care; respect from HCPs; the importance of using language that builds us up, rather than tears us down; working to diminish diabetes stigma; the philosophy of ‘Nothing About Us Without Us’; highlighting the need for more research about women’s health and diabetes – are universally acknowledged as issues that, if addressed and improved, can mean better outcomes for others with diabetes. But, these are my things and #YDA(dvocacy)MV. 

Last week, I attended the Shifting Gears Summit which was coordinated and hosted by the Consumers Health Forum of Australia*, and the word ‘patient leader’ was used a lot. I realised that I was bristling with the term leader, not necessarily because I object to it, but more because I know how others would react if we started using it widely. I wonder why I feel that way. I happily and easily acknowledge many diabetes (and other health condition) advocates as leaders in what they do, knowing that they too may cringe with the label. 

And yet, others working in the healthcare space are considered leaders – and usually, quite rightly so. We recognise HCPs, policy makers, hospital administrators, researchers and industry representatives as leaders in what they do, however the term seems to not be quite so comfortably applied to those of us with lived experience. But surely our experience and our role should be equal when all stakeholders are engaged. Otherwise, are we just there as window dressing? When an HCP offers their opinion on a diabetes issue, it does not necessarily mirror that of all HCPs, and yet no one questions their right to share that opinion. But despite this, they will be identified as leaders in their field. Why is that not also afforded to diabetes advocates?

It is definitely worth noting that I have rarely, if ever, seen, heard or had pushback from the HCPs I’ve worked with at the term advocate, or even leader. In fact, on a number of occasions I have been horribly embarrassed with the words – the very kind words – that have been used to introduce me. I’m always very touched that they see me in that light, but I am horrified at how other people with diabetes might react to their words. Why do some people with diabetes (myself included) want to distance ourselves from these descriptors?

Is it because in most cases people who are doing the sort of work we do are unpaid volunteers? Or is it because the status of the ‘patient’ is considered below that of others working in the healthcare space? Is it because there is no formal qualification needed to become an advocate?

Whatever it is, I don’t think we do ourselves any favours, or any favours in the endeavour to ensure the lived experience voice is considered as important – if not THE most important – in discussions about diabetes. In fact, that sort of rhetoric does nothing more than keep us in our place – that of a measly patient who can do no more than share their own tales of woe. When we say, or are told, ‘You’re only telling your story’, that devalues the contribution of advocates. It’s already hard enough to be heard, but then to be told that our story doesn’t mean much is offensive and harms us. I would never think to tell another PWD that, and it saddens me that others do.

We don’t have to label ourselves in any way we don’t feel comfortable, and we can describe ourselves and what we do in diabetes how we would like. I’ll keep throwing around the word advocate, and use it to describe myself. And continue to elevate the people with diabetes in the community who I see as being advocates, too. 

*DISCLOSURE

I received a scholarship to attend the CHF Shifting Gears Summit after applying through an open submission process. Registration was paid for by CHF. I was not paid to attend.

Click to be taken to a great Twitter discussion about advocacy in the DOC