With much of the world donning green accessories to mark St. Patrick’s Day, we thought it’d be a perfect time to chat with Grainne Flynn, an Irish advocate who was diagnosed with type 1 diabetes (T1D) almost 3 decades ago.
Flynn began blogging at Blood Sugar Trampoline back in 2010 and then eventually co-founded Thriveabetes, an Irish diabetes community-led conference (that has been off the grid since the pandemic started, while Flynn is pursuing a degree in public administration and communications).
So, before we indulge in green beer and corned beef, here’s our Q&A with Flynn.
I was diagnosed with diabetes in 1993 when I was a 20-year-old student, and in the 1990s in Ireland there was little or no diabetes education, so I “coasted” through diabetes as best I could for the first 6 years. However, when I met my now-husband who wanted to learn more about supporting me and my diabetes, I discovered the most important resource in my diabetes today — the internet! Back then, diabetes online was just a collection of established websites, but it was enough to give me the basics and to start questioning the healthcare I was receiving.
Then, I moved from Ireland to Minnesota for a couple of years and had access to good healthcare AND formal diabetes education. In 2003, while preparing to start our family, I learned to count carbs and how to adjust my insulin, which gave me a sense of control over my diabetes. I feel that up until then my life very much had to fit into diabetes, but now I was able fit diabetes into my life.
I moved back home to Ireland in late 2005 and we had our second child in 2006. It was shortly afterwards that I began to struggle with my diabetes management. It was probably a combination of the stress of moving, building a house, being a mum of two, and living in a new town where I didn’t know anyone yet. I was also struggling to find clinical care that could help me.
I was following blogs and websites from the United States at the time where people were advocating for themselves to improve the care they received. It inspired me to set up a local diabetes support group, because who better to help me find better care than other people in the area? I had no idea that what I would also find was a community of people who knew exactly what I was going through. We could talk about what we were most afraid of with our diabetes. We talked about practical stuff like accessing our diabetes supplies through our health service, what we needed to do with our car insurances when diagnosed, and lots of other stuff that our healthcare teams didn’t experience, or had much knowledge of.
Since finding my local community in 2007 and the subsequent explosion of the online community, I have been able to stay up to date with all the advancements in diabetes care; I learned how to really fine-tune my carb counting skills, I’ve been able to find the resources to get an insulin pump in 2010, a continuous glucose monitor (CGM) in 2015, and I started “looping” in 2018, which has been completely life changing. Right now, my diabetes management is in a place I’m happy with and would like to maintain. All of this has been possible because of the DC as well as the DOC.
Next year, 2023, I’ll be celebrating my 30th year of living with diabetes, and at the end of this year I will have one of those birthdays with a zero. I can honestly say that in the last 4 years since I started using DIYAPS, I’m in a place where diabetes seldom interrupts my life.
I found the international DOC initially through diabetes bloggers and websites, with DiabetesMine being one of the first blogs I came across. I set up my personal Facebook profile in 2007 and began following more bloggers and websites from there. I was most definitely a “lurker” for many years.
Prior to 2010, there were no Irish diabetes blogs or social media groups that I’m aware of. I did have local face-to-face support since 2007, but we were still a very small group, so I would try to find ways to reach out to more people with diabetes in Ireland through online forums and Google searches.
In about 2009 or so, a newly diagnosed adult with T1D, Niamh Downes, also went looking for other people with diabetes online, and she set up a private Facebook group which took off. I came across that group within days of it being set up in one of my repetitive Google searches. It was a very good day!! This group is called Diabetes in Ireland and it currently has 5,200 active members.
I didn’t join Twitter until 2016, and actively began participating in the United Kingdom’s DOC which follows the hashtag #GBDOC and would scroll through the American tweet chats the morning afterwards (due to the time difference).
The Irish DOC is mostly based in private Facebook groups, and there are a lot of people on Instagram too. We have a very small community on Twitter, so our DOC hashtag #IREDOC is not widely used but we do connect with the hugely active communities in Northern Ireland (#NIDOC) and the U.K. (#GBDOC) even though we have different health systems. The U.K.’s @GBDOC hosts a weekly tweet chat which is really popular.
However, with the pandemic our local in-person support groups moved their meetings to online, and it’s working really well. Removing the distance barrier means there are more people attending. For example, the group in Dublin is attended by people from all over the country.
The DOC was really a lifeline for people with diabetes in Ireland, myself included, as it became almost impossible to contact our care teams in the first month of our lockdown in 2020. This still remains an issue for some in Ireland. The membership of our private online group grew by approximately 1,000 members in the first 3 months of the pandemic (March to May 2020). I also noticed that there were a lot more people with type 2 diabetes joining the group, and this is really great to see because there is so little peer support offered to people with type 2 diabetes in Ireland.
The DOC was and still is a great source of information to help us understand how we needed to protect ourselves, and later on in 2021 it helped us navigate the vaccination program, which was confusing in the beginning. It also signposted people to trustworthy information on the vaccinations, which I feel helped people have confidence in the program.
St. Patrick’s Day in Ireland has evolved over recent years from a religious celebration of our patron saint, who brought Christianity to Ireland, to a celebration [of] our nationality identity and our culture — much like what the 4th of July is in America, I expect. Our St. Patrick’s Day festivals are jam-packed with Irish dance and music as well as the traditional parades. We have turned into a weeklong festival since the early 2000s, known as “Seachtain na Gaeilge,” which translates as Irish Week.
I’m not sure I can comment on St. Patrick’s Day in the U.S., as it’s been over 16 years since I had experience of one. I would say that Irish traditions do immigrate with Irish people when they have to adapt to a new cultural environment. For example, corned beef and cabbage is an American adaptation of Irish bacon or ham and cabbage.
This started in 2015 as a way to create in-person peer support opportunities, and we held our first conference that year and in the years that followed.
Our last in-person Thriveabetes conference took place in October 2019, and we hadn’t planned to do an event in 2020. However, as World Diabetes Day fell on a Saturday, we organized a virtual event and it was hugely successful with over 200 households attending.
Since then there has been an increase in virtual events in Ireland, and up until February 2022 we were still living with pandemic restrictions, so it didn’t feel right to try to organize a large in-person event. So our group of volunteers has taken a little break to regroup and recharge.
We hope to start organizing our next conference in the coming autumn and for the conference to take place in spring 2023. It might seem like a long way off, but a lot of work goes into planning an event like Thriveabetes, and as we are all volunteers trying to work on during our evenings and weekends, it takes 6 to 12 months to do it well. So watch this space!
I think one thing that is unique about Ireland is that we are very much a community-oriented society. In our first lockdown, there were hundreds of volunteers on call in every single community to make sure that anyone who was cocooning, or isolating, was looked after.
We had local sports teams who would drop groceries and medications to people in remote areas, and a lot of this volunteerism was coordinated by local government. I think this is why our diabetes communities work so well in Ireland; it’s bred into us, we’ve grown up in close communities.