I was interviewed for an article last year and loved the copy they came up with, but it was the heading that got me. ‘Living a Life of Advocacy’ it screamed at me bold text, perfectly popping out from the hot pink background of the photo they’d selected to accompany the article. 

The photo is from a while ago now. It was 2013, and I was on a stage in Paris where I’d been invited to give a keynote at Doctors 2.0 – a digital health conference that brought together people using, developing and constantly thinking about digital health solutions.  I look at that photo and love the action shot of me mid-sentence, one hand holding a microphone, the other waving, because of course. 

But I also know that at the time I was about 10 weeks pregnant and behind the confidence I projected on that stage, I was terrified and anxious. It was a terrifying time as I balanced wanting to be the best advocate I could while also wanting to bunker down back home, wrap myself in cotton wool and do nothing but protect the baby I was growing. 

As I spoke about how digital solutions bring together a diabetes community from across the globe, I didn’t know that a mere four weeks later, while in New York, I would miscarry my much-wanted baby. I didn’t know that I was about to face the most challenging and emotionally traumatic period of my life. I didn’t know that, because all I thought about in that moment as I was on that stage with the hot pink background, was how important being there was – people with diabetes on stages as equals with health professionals, disrupters and industry. It was big!

Living a life of advocacy. All while almost being afraid to breathe because I was worried that every jolt, every movement, and the active way I present was endangering the baby. No one else would have known that was going on. There was one person, and one person only, at the conference who knew I was pregnant, and she was sitting next to me on that stage. I figured that I needed a friend with me if something went wrong. No one else was knew, and no one – no one – knew how afraid I was. 

In a recent podcast interview, I was asked where this advocacy drive came from. Without missing a beat, I answered that it was in my bones. Because it is. My mum, the trade unionist, had me at protests while I was still in a pram. I went to university to study music, but it makes perfect sense to me and those who know me that I’ve wound up doing what I do, being who I am, advocating my way through my days. In my bones. 

But that doesn’t make it easy. It doesn’t stop the burnout from it, or from feeling overwhelmed. And when it’s diabetes that is the focus of those advocacy efforts, while at the same time, I spend so much time focusing on living with diabetes, there’s a weight that seems compounded. It is heavy. 

Last year, almost 12 months ago to the day, someone decided to email me about Spare a Rose, reaching out through my blog and, with nothing better to do, thought they should let me know that no one cares about the campaign, and that I should understand what people think about me (which wasn’t much, apparently). It was shitty, it was unnecessary. It was unnerving. After the third or fourth one of those emails, I decided to share one on Twitter. I had no idea who it had come from, but I figured that whoever it was would see my tweets and understand just how upsetting it all was. 

It did the trick because it was the last time I heard from my anonymous critic. At least, for the 2021 campaign.

Alas, a week into February 2022, old mate was back, this time with a comment on my blog post about Spare a Rose. I’m guessing it’s old mate – I could be wrong, because who knows when people won’t put their names to things, but the sentiment was the same. It has the same hits as last year. It’s cruel and unnecessary and, once again, has completely rattled me. 

It confuses me beyond belief that of all the advocacy issues I’m involved in, it’s the one that literally is saving the lives of other people with diabetes that was the reason someone thought they would take the time to message me. I mean, I get my fair share of criticisms about language, and other topics that are not everyone’s cup of tea. But surely if there is one thing we can all agree on, it’s that a campaign that is saving the lives of people with diabetes in under-resourced countries is not controversial. 


It all feels so, so heavy.

I know I’m not alone. I know it is a side effect of advocacy. I look to advocates in the diabetes world and I am in awe of what they do. 

I am in awe of people advocating to healthcare professionals to be more mindful and thoughtful of the way they interact with people with diabetes.

I am in awe of people who work in industry, invading that space, gaining employment and while they are there, building a career that is forged in advocating to create devices, and device adjacent materials to make diabetes better, easier – and those devices more relevant.

I am in awe of people advocating about the injustices of insulin pricing and access, because they want to change the paradigm that means that some people simply cannot access the very drug they need to stay alive.

I am in awe of people who advocate quietly for years, and make big change by doing small things, over and over and over again. 

I am in awe of advocates who have not waited, and instead, built solutions to make their lives easier and less burdensome and then – once they had worked it all out – made it free and available to anyone else who wants to benefit, and then remain there to support them. 

I am in awe of creative people who use art, poetry, drama, comedy, music, as advocacy tools to show people how diabetes impacts everyday life and to change how the world sees those of us living lives of diabetes. 

I am in awe of the work all these advocates do, and I wonder if they’re also feeling that physical weight that comes from their advocacy.

Do they feel that pressure coming from all different directions, weighing them down from above while also feeling as though it is crushing them from the sides? Do they feel overwhelmed? 

I do. And it really, really is heavy.