I’m very excited to announce the launch of the Type 2 Diabetes 100 Voices project which is being lead by my #Diabuddy of mine and fellow Diabetes Ireland Advocacy group member, Valerie Humphreys.
As someone with type 1 diabetes, I have been able to benefit from the support I’ve received both offline and online from other people with type 1: I have never had to hesitate to share my diabetes online and since 2010 I have never struggled to find the support of other people living with diabetes.
In recent years, we, in the Diabetes Online Community #DOC have noticed the huge absence of the voices of people with type 2 diabetes and would like to encourage and support voices from this community.
I reached out to Valerie when she shared similar thoughts through our private community group and the Type 2 Diabetes Voices Project was born. #Type2Voices #T2D100Voices
ABOUT TYPE 2 100 VOICES
The Type 2 100 Voices project wants to create a safe space, without judgement, for people with type 2 diabetes to share their stories and to help us tell people what it is like to live with Type 2 Diabetes in Ireland. We find that there is a lot written about type 2 diabetes but not very much about the people who live with it and we would like to change that.
NOTHING ABOUT US, WITHOUT US
The project’s first objective is to collect 100 survey responses. People are free to keep their responses anonymous, however all information shared will be confidential.
Once we have collected “100 Voices”, we will review some of the common themes to produce a report on people’s experiences in living with type 2 diabetes and to raise awareness of type 2 diabetes. We hope to share this report with Diabetes Ireland and with the HSE’s National Clinical Programme for Diabetes.
STRONGER TOGETHER
We hope that by gathering “100 Type 2 Voices” that it will foster a community of people who support and learn from each other, that we can address the fear and stigma associated with diabetes in general together. We also hope that the voice of people with type 2 diabetes and their/your lived experience is stronger with our decision makers in healthcare policies. #StrongerTogether.
TYPE 1 DIABETES - HOW YOU CAN HELP
I realise that most of my blog readers have type 1 diabetes so I would really like your help to share this post with people who you think would be interested and to share with people you may know who have type 2 diabetes. This is the survey link to share.
TYPE 2 DIABETES - YOUR VOICE MATTERS
If you are a person with type 2 diabetes, please share your story with Valerie and “Type 2 Voices” who would like to share your experience please go to this survey link for more information.
VALERIE’S TYPE 2 DIABETES STORY
I have asked Valerie to lead by example and so here is a little more about Valerie and her diabetes story.
ABOUT VALERIE
My name is Valerie Humphreys. I am originally from England (but moved to Dublin 40 years ago!) and, in no particular order, am a life partner, mum to two thirty somethings and a Type 2 son in law, retired secondary teacher, homemaker, carer to my husband, gardener, walker, reader, DIY and craft enthusiast and much else. I was diagnosed with Type 2 Diabetes three years ago by my GP. I put those things first because my diabetes doesn’t define “me”, although it has certainly become a part of my life that I think about every day since I was diagnosed three years ago. I have Type 2 Diabetes and I manage my condition with diet and a small amount of metformin.
It seems Type 2 Diabetes was in my genes as my Dad was diagnosed back in the days of scales, diet cards and urine testing. Later my Mum was diagnosed too and we believe that she probably had Type 2 diabetes a long time but it only showed after she didn’t share his diet! As my parents had run the British Diabetic Association group in Coventry for many years it was natural for me to seek out Diabetes Ireland after I was diagnosed. It was there that I met Grainne after I was invited to join their advocacy group. Soon after that I also became a patient rep on the HSE National Clinical Programme for Diabetes Committee, possibly due to lack of other options from the Type 2 community!
When I have reflected on the very short conversation which I had with my GP at diagnosis, and then have kept coming across social media posts about similar experiences I have become more and more concerned that many people with a diagnosis of diabetes are not getting the level of help or advice which they require from the professionals. “You are diabetic, take four metformin a day and come back for a test in three months” is not sufficient!!
Did I find my way? Yes, but only after a great deal of searching on the internet and several visits to the library. I was in a position to do that but many would not be. I began to wonder if my father wasn’t better off in the mid 1960’s with clear direction at diagnosis. Despite my knowledge as the daughter of a person with diabetes I still felt very lost and “at sea” with my new situation. My body was suddenly not behaving as I would wish it to. Yes the hospital appointment came and yes I fixed up a course on diabetes management but it all came rather late in the day. I have had to sort out how to manage my diabetes on my own and this concerns me. I have my own checklist and I make sure certain things like eye and foot checks are done each year but I get very little real help from any professionals to stay well and yes I worry, about getting older, about not keeping on top of things as well as I can now. If I am right and my story mirrors many others I see this as a situation which should be highlighted by Type 2s themselves who, after all, are the only ones who know the true story.
WHY TYPE 2 DIABETES 100 VOICES
On top of that I have been very concerned about the media coverage of Type 2 Diabetes during the Pandemic with its rather cruel emphasis on weight and poor diet. In my case, I had gained weight but, once my diabetes was controlled, I lost it very quickly. For me it was a symptom of an imbalance in my body. My son in law would say the same.
Much is said about us Type 2s but little is said by us
Over the past few months, I have become aware that much is said about us Type 2s but little is said by us. I would love it if our representatives and the media could quote actual experiences rather than making (often less than correct) generalisations. As a patient rep I would like to speak with more authority about the lives and concerns of Type 2s in Ireland today rather than relying on my own experience and my limited contacts. I believe that, even though we seem to be quite a shy lot, we need to talk together more often and speak out more loudly about our concerns and our needs. Grainne and I are hoping that you will answer our call and be a voice for the Type 2 community by filling in our questionnaire.
Ultimately, I would really love to meet more people with type 2 diabetes to share our experiences and to learn from each other. If you are a person with type 2 diabetes who feels the same then please fill out our survey.
OUR VOICES MATTER!
Thank you Valerie!
Thank you for sharing Valerie. You can also contact Valerie on email: type2voices@gmail.com