Happy World Diabetes Day! What better way to mark the occasion than with another edition of T1 Talk?
What’s T1 Talk, you ask? It’s a series of conversations with Bec of Sweet and Sour Diabetes, which we started earlier this year to dissect some of the issues affecting young adults living with type 1. You can check out all of our previous instalments here. Today we’re chatting about all things diabetes awareness, with the first part of the chat here and the second part to follow on Bec’s blog here.
What does diabetes awareness mean to you?
Frank: Diabetes awareness is simply sharing about diabetes with those around me who aren’t aware of, or don’t have a connection to diabetes. It could be as unintentional as having to request a few hours off work to attend a clinic appointment, or as purposeful as writing a blog post for my Facebook friends to read on my diaversary.
Bec: I would agree with that. I started my blog in an effort to spread diabetes awareness. By that I mean, to stop those around me from saying unintentionally shallow and hurtful comments about my diabetes. It means education. It means understanding. Most importantly, it brings empathy.
Frank: While I’m really sorry that those around you were insensitive towards diabetes, can I just say how much I love your reasons for blogging? I didn’t really have much of a purpose behind blogging, it’s something that I guess formed a purpose over time.
How aware are those around you of your diabetes? How important do you feel that this is?
Frank: While I don’t make a big point of ‘raising awareness,’ I think that I’m pretty transparent about my diabetes around others. I pull out my pump without hesitation, I no longer walk out of the room to check my blood sugar, and I’ll talk about my diabetes if it helps to explain something. All of this has helped me to feel really comfortable with my condition and manage it in the best way that I can. I was always so self conscious about other people’s reactions to management activities, but in reality nobody even seems to notice!
Bec: I’m glad you’re seeing no one overly notices the management activities. I find that I’m now comfortable enough in my own skin to put that aside.
I would say the people around me are aware enough. They can help in a crisis, and they know I didn’t bring it on myself. It’s so important that my friends and family are aware from a safety perspective, but also from a support perspective. I manage it entirely independently, but it helps to know you have people in your corner who understand as best they can.
Frank: I think it’s great that you’re thinking about others being able to look out for you. I only tend to think about it if I’m going to be on my own for a while. I wear my Medical Alert bracelet, I’m well organised with backup supplies, and I prepare a bit of a travel plan with instructions if I’m unable to speak for myself. But not sure how well equipped people would be if I needed help. I’m still very independent with my management.
There are lots of causes and issues in the diabetes community that people feel strongly about. Is there one particular issue or cause that resonates with you?
Frank: The thing I feel most strongly about is helping people to find a good support network. I was living in relative isolation with my diabetes for many years, and peer support has really changed my outlook. There are endless places to find practical information and peer support online, whether it be through closed Facebook groups, Twitter, forums, blogs or websites.
While it was the last thing I would have wanted to do on diagnosis, connecting to other people with diabetes in person is just so worth it. There is nothing more uplifting that having a tribe of people like me who I can turn to when diabetes doesn’t play nicely. Or hearing the words “me too.”
Bec: Interesting how the causes we’ve come toward are the polar opposite of how we were at diagnosis. I really want to keep building my connections with other people with diabetes in person. I don’t have that support base yet, but I certainly have people around online.
Frank: Well, you did say that you were too busy to come along to Melbourne earlier this year…In all seriousness, it’s not an easy thing to do. I was lucky in the sense that I joined a committee of young adults with diabetes and some great friendships resulted from there.
Bec: I suppose I have two main causes I strongly advocate for: accessibility of resources and mental wellbeing.
Continuous glucose monitoring is new in my diabetes management, and I have been part of the campaign for years to have it subsidised by the government. I’ve written to my members, written blog posts and shared my story time and time again. Recently the government have begun to subsidise CGM for people under 21. It’s a start, but it’s not good enough. I need a CGM just as much as a 20 year old. But I’m over the age limit, so suddenly it’s cut off and I need to spend an enormous amount of my own money to afford the upkeep. I’m lucky my family pitched in for half for my 21st birthday.
Mental wellbeing is a newer cause on the diabetes agenda for me. I never dreamed in a million years I would be advocating for improved mental health and awareness of mental illness, let alone sharing my own stories. I really didn’t talk about that stuff and was basically dragged to a psychologist as a teen. Diabetes (of all types) and mental health are so inherently linked and I feel that sharing our stories takes away a lot of the stigma around it. I don’t like my anxiety and depression, but I think I’ve come to accept it and have made gains over the years. I guess at times I do feel some shame around them, but I’m getting there. There’s more to me than my anxiety though. That I do know.
Frank: I wouldn’t have guessed that mental wellbeing was one of your newer causes. I have this running joke about one trick ponies with a few other diabetes bloggers, and I’d say that mental health is yours! In a good way, of course. I definitely agree with you, it’s something that I’ve come to acknowledge and prioritise in my diabetes management over time.
As for CGMs? I’ve used the FreeStyle Libre, and I love the additional data insight. Yes, I could probably pay for a CGM if I really wanted one. But I just can’t justify those kinds of costs with the other financial goals I’m working towards at the moment.
The second part of this conversation continues over on Bec’s blog here.