Campaigning for Diabetes in the UK

6/1/16
WRITTEN BY: Ellie Huckle
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This month I was in a news article for my local newspaper, (this was the first time I had ever been interviewed by a journalist about my campaigning). I’ve been involved in raising awareness for Type 1 diabetes since I was diagnosed at age 11 in June 2009. I remember going back to school after being diagnosed, and the lady in the school office said to me, “You’re handling this really well. You’ve taken it all in your stride.” I smiled, proud of myself — I guess I had. I made a vow to myself when I was diagnosed, that whatever Type 1 was going to throw at me, I would handle it; I just had to make something of this, something positive.

Living with Type 1 diabetes means you can’t ignore it. It’s 24/7 and it’s relentless; there is not a moment where you can forget about it. Your blood sugars are constantly fluctuating, and more often than not you’re not going to feel 100%. We depend on insulin to survive — our bodies constantly fighting an internal battle. Type 1 diabetes is probably one of the only chronic illnesses that requires so much input from the person living with it — we are our own doctors, pharmacists and nutritionists.

I’ve been in diabetic ketoacidosis about seven times since I was diagnosed, I’ve seen psychologists, I’ve been to dark places with Type 1 diabetes, but I’ve come out on the other side. And what I’ve learned over the past six and a half years is that Type 1 diabetes is not only difficult, but it’s often misunderstood. So for the past six and a half years, I’ve turned my diagnosis into an opportunity to raise awareness. Yes, I’ve struggled with it, yes, I’ve had times where I’ve felt sorry for myself and wondered what’s the point, but above all, I’ve carried on.

I signed up to be a JDRF Youth Ambassador when I was around 14 years old in 2012. That was my first step in my plan to not sit back and do nothing. Along with that, I started up my blog that has over 72,000 views to date, from my blog, I got involved in Diabetes UK, who invited me to Parliament in June 2013 to do a speech for them in front of various MP’s and their constituents to try and get the bill ‘Type 1 Essentials’ passed in the House of Commons. It was a bill that would improve care for children with Type 1 diabetes. That was my first ever public speaking experience in terms of diabetes.

I’ll never forget that feeling, when I finished my speech — it felt wonderful and I knew I had done something really commendable. “They clapped the longest for you” is what someone told me on Facebook after the event. It was my first official involvement in campaigning for Type 1 diabetes and after that I knew I wanted to continue. I had so many comments on Facebook from people thanking me for standing up for them and for being an ambassador for Type 1 diabetics. And I did just that, I continued!

My blog posts became more frequent, I connected with other people with Type 1 diabetes on Facebook and Twitter and I became an admin for the Facebook group “Type One Teens”. I’ve been told countless times by people on the group that I’ve helped them so much, and it feels brilliant to be able to help others and make sure they know that they aren’t alone. I’ve seen a HbA1c of 15%, and I’ve seen a HbA1c of 7.3%, so I know what it is to struggle with this disease. I also know what it is to reach a point where you’ve made peace with it.

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I wouldn’t say I was in denial, but I was in a state of preferring to ignore diabetes because that was easier. It wasn’t until I was admitted to hospital in July 2014 for 2 and a half weeks to get my diabetes back under control that all the emotions related to keeping on top of Type 1 came flooding back to me. I realised why I found myself never bothering to check my blood sugar or do my insulin because it was just “easier” not to. I also realised though, that feeling healthy and not tired all the time and having good control of my blood sugar is how I should be living my life — not like a zombie. I like to think that is why I’ve gathered up so many friends in the world of Type 1 because I can relate to both ends of the spectrum. Of course I would rather have not struggled with Type 1 for so long, but I did, and I’m going to help everyone else who finds themselves in the predicament I found myself in 2014.

My trips to Parliament didn’t stop at Diabetes UK in 2013. In March 2014, after a lot of social media engagement with JDRF and filling out a massive application form, I was headed to Parliament, as co-chair of the event and ready to do a speech in front of more MP’s and their constituents. This time it was to lobby for government funding into Type 1 research here in the UK. We get nowhere without research; the researchers and the scientists work behind the scenes to improve the outlook of those of us with Type 1 diabetes. They are our hope for a world without Type 1 diabetes. My local MP joined me at the event and my mum came along with me too, there was a room full of us all trying to get our MP’s to back government funding.

Type 1 Parliament was incredible, I had such a fantastic time and to be able to represent all of us living with Type 1 diabetes and show the daily struggles that we endure was an honor. Not only was I showing what we struggle with, but I was showing how we cope with those struggles — just because we have Type 1 diabetes, it doesn’t mean we are any less. I was again inundated with lovely messages from people thanking me, (I don’t need thank you’s!) I’m just happy that I’m helping out in some way.

In between trips to Parliament and campaigning, I am generally involved in raising awareness. You will almost always catch me responding to misconceptions about Type 1 diabetes too. I have seen countless articles, videos, Instagram posts, all contributing to the misconception that diabetes is always caused by sugar. People do not differentiate between Type 1 and Type 2. We, as Type 1 diabetics, know that we have an autoimmune disease, the general public? Not so sure. It is also a well known fact that Type 2 diabetes is linked to diet, but it is not the main reason, most people have a genetic predisposition to it and it can come on due to old age. I always say that Type 1 diabetics are not only not being kind, but do themselves a disservice when they shame Type 2 diabetics and complain about them being overweight. We are always going to be lumped under the umbrella term ‘diabetes’; it’s likely that people won’t differentiate between the two types, and with Type 2 being the most common type of diabetes, it’s also likely that when people mention it, they’re talking about Type 2. If we can help dispel the myths about Type 2 diabetes, we can help dispel the myths about Type 1 diabetes in the same process.

I’m 18 years old now, and while I took a lot of time campaigning and raising awareness, I recently took the backseat for a year or so. (I’m happy to have gotten back into it this year.) March saw me flying to Glasgow to be one of five professional bloggers for Diabetes UK at their professional conference. It is normally restricted access to Healthcare professionals only, and so our job was to be the voice for those of us with diabetes and relay the information back to the Type 1 diabetes community via Facebook and Twitter. It was my first time blogging in a ‘professional’ capacity, and also my first time getting on a plane on my own — that was nerve-wracking!

I have dedicated my life with Type 1 diabetes to helping others who also live a life with Type 1 diabetes. (Whether it be giving them advice, being a friend to them, campaigning for better healthcare or campaigning for funding into research and into a cure.) It’s fun and it gives me a bigger purpose as I believe it to give other people hope. I’m one of many who stand up for everyone else with Type 1 diabetes. It is a way to show who we are. Yes, we have Type 1 diabetes but we’re bigger than it, we’re more than it and we’re going to fight for change and ultimately a cure. We are a massive community, with the power to achieve change, with the power to have a positive influence and make a difference.

I’m not saying everyone has to speak in Parliament and write a blog, but even if it’s something small, it can make a difference. You’ve all heard the phrase a drop in the ocean, right?


Read about T1International and Their Global T1D Mission



Ellie Huckle

Ellie Huckle is 18 years old and from London, England. Her favourite activities are being with family and sporadically updating her blog. Diagnosed with Type 1 diabetes at age 11, in June 2009, she can often be found trying to correct people’s misconceptions about said disease ... or playing with her Bengal cat. Her relationship with diabetes is complicated, but she's decided that they can put up with each other!