Guest Blog: How Diabetes Advocacy Helps Me
I am delighted to introduce you to Gráinne and I have asked her to write a guest blog for me about her Diabetes advocacy, because I have no idea how she has time to sleep with all the work she does to improve the lives of all of us with Type 1 Diabetes.
Gráinne’s blog, http://BloodSugarTrampoline.com is a combination of her personal diary about living with type 1 diabetes in Ireland and a way to share information with others to help them on their own diabetes journeys. Gráinne is also one of the founding members of Thriveabetes; the first Irish type 1 diabetes conference organised by people with type 1 diabetes whose mission is to Inform, Motivate, and Inspire all people living with diabetes. Over to Grainne:
My name is Gráinne and I was diagnosed with type 1 diabetes in 1993 as a student. I’m originally from Offaly but I now live in Clare. I’m a mum to two teenagers, a diabetes event organiser, an advocate, a diabetes blogger and I work part time. And, I love all of it.
However, ten years ago, I was in a very different place to where I am today
I had moved back to Ireland after living in America for four years, but I had moved to a new town where I didn’t know anyone. I was really, really struggling with my diabetes management and I wasn’t happy with my diabetes care. My lowest point was after the most horrible clinic appointment I’ve ever had where as soon as I got to my car I burst into tears. As the tears were streaming down my face, I decided I was not going to accept that this was the best care I could get. This was my health and I had children I wanted to be around for! And, I was going to do something about it!
I had seen a piece in the local paper about the newly formed Clare branch of Diabetes Ireland, I dug it out, called the number and found a friend. I jumped onboard totally, even though my Diabetes Ireland membership the first time round in the nineties didn’t help me much.
Within 3 months, we had set up diabetes support groups in Clare, I found a fantastic endocrinologist and I found a fantastic group of new friends who had decades of knowledge between them. I learned so much from everyone and I learned that there were huge differences in the level of care for diabetes depending on which clinic you attended. This is where I became interested in changing the system and being an advocate.
The timing of Diabetes Ireland’s advocacy movement called Diabetes Action http://www.irishhealth.com/article.html?id=17867 in 2010 to address all of the issues around this geographical diabetes care lottery was perfect. And, this is where I really got involved in advocating for better health services for people with diabetes.
Up until Diabetes Action, I had no idea what I could do as an individual with diabetes to campaign for better services. I had been so lucky to be in the right place at the right time to make sure I got diabetes education in 2003, again in 2010 for getting my insulin pump and again in 2015 when I was able to get a CGM continuous glucose monitor. All three of these diabetes tools were a huge help in improving my diabetes management and my quality of life, especially my CGM. And if I found these tools beneficial then maybe others would too? Life with diabetes is more difficult that life without it and I want all people with diabetes to have the tools and information that might make it just that bit easier.
I share my “living with diabetes” trials and triumphs through my blog: http://BloodSugarTrampoline.com and I continue to volunteer as an advocate by work closely with Diabetes Ireland. I feel like the time is right again to revive the Diabetes Action advocacy movement and get things done.
The biggest benefit for me as an advocate is that I get to meet so, so many people just like me. I’m passionate about bringing people with diabetes together at real life meet ups: this is why Thriveabetes began. I’m one of the three founding members of this initiative where we bring 300 people living with type 1 diabetes together of all ages for one day. We learn and inspire each other to thrive with type 1 diabetes. The purpose of this day is not so we can compare ourselves to others but it’s to create a place where we can talk about what worries us the most about living with diabetes, the things we find the most difficult about it and to find out that there are others just like us going through that same stuff.
My plans for the coming year include organizing Thriveabetes 2019 https://thriveabetes.ie/blog/2018/11/1/thriveabetes-2019-date-announcement with our great team of volunteers but I’m also going to get more involved in advocacy issues through Diabetes Ireland, such as:
- Increased access to diabetes technology including the Flash & Continuous Glucose monitors (Libre, Dexcom, Medtronic, etc), and Insulin Pumps,
- Widening access to structured diabetes education such as DAFNE & CODE,
- And to fight against diabetes discrimination in employment, schools, driving license cost inequality and insurance
Gráinne and her family
Yes, I am volunteering my life away and I find it challenging sometimes to keep all the plates spinning but there is a community of hundreds who benefit as I do from all of it and whenever I ask for help it’s always there. Always!
I’m also very luck to have a family who are now older and amazingly supportive because they have seen the smiles, the tears and the hugs that are shared at Thriveabetes and know that their mum had a little something to do with it. My husband loves the buzz and excitement of Thriveabetes and so he helps out in whatever way he can to make sure I can make it happen. Plus, he gets to talk about the things my diabetes causes him worry with other spouses too.
I want to thank Anne for asking me to do a guest post on why I advocate for people like me and to talk about some of the challenges in being a diabetes advocate. But the rewards far outweigh the difficulties and being part of the diabetes community and having friends who are also advocates is one of the biggest rewards.
The Clare diabetes groups meet every second month: type 1 in February, April, June and October and the type 2 group in January, March, May, September and November. Contact firstname.lastname@example.org for more information
If you would like to follow Gráinne you can find her at the following social media links;
Instagram – https://www.instagram.com/bloodsugartrampoline/
Linkedin Profile – https://www.linkedin.com/in/grainneflynnblogger/
Facebook page: https://www.facebook.com/Thriveabetes/
Twitter handle https://twitter.com/Thriveabetes
Instagram – https://www.instagram.com/thriveabetes/