I just recently celebrated my 22nd diaversary – albeit under Covid-19 kind of circumstances and no physical celebrations happening – it was my most social one so far. In fact, it was only the second year I even acknowledged it enough to celebrate. Because – how do you celebrate when no one around you relates to what you’re going through? When no one really understands the resiliency and the warrior spirit required to live with what we live with – 24/7 and 365 days of the year – who do you celebrate with? It took me almost two decades to make my very first T1D friend.
Many of us shares similar stories of having taken a very long time to connect with other T1Ds – for multiple different reasons. Some of you reading might still not have connected yet. Maybe you’re on DIYA’s website to explore what that could look like? You might not want to identify so strongly with the disorder or you might feel hesitant of reaching out, maybe you don’t know how? Your family might discourage you from being open with having diabetes and you might feel afraid of what others would think of you if you were more vocal about it.
In my case, when I got diagnosed in 1998, that was way before social media made it super easy to find people with similar interests and needs. And in my teens, I was not very keen to “feel more diabetic” than I had to. None of my friends had any strange diseases – and more than anything I just wanted to be as “normal” as I possibly could be. Whenever I told anyone about having diabetes, all I got back was horrible stories of their grandfathers having to amputate their feet or going blind. In fact, my very own grandfather had passed away already in his 50s from diabetes-related complications.
I didn’t connect. I didn’t make any effort to be part of a community. I decided to do it on my own. And oh, how I wish I would have chosen differently.
More than two decades later, in December last year, I was sitting next to a bonfire in Faridabad. I was looking at all the smiling happy faces around me – all of them belonging to T1Ds, parents, partners and siblings – experiencing the warmth of the community, the calm and safe feeling of being in a group of people knowing exactly what you’re going through. I realized then what I had excluded myself from for so many years. Sure, I was the only foreigner and the only one not understanding a word of the joke that everyone was laughing about – but it didn’t matter at all, I still felt like I belonged in a way I had never felt before.
Due to my work I’ve been moving countries more often than what’s perhaps reasonable. Moving back to Bangalore last year was my ninth country move in eleven years. With that frequency of moving I’ve never taken the time to connect closely to a community where I live. So, one of my best decisions ever was to make sure to connect with T1Ds in India even before I moved back this time. And I was very lucky that the first two people I wrote to on IG was two of the co-founders of DIYA – Apoorva and Sahil.
Today, some of the people closest to me are other T1Ds. Diabetes has changed from being a burden causing me anxiety and stress – to becoming a positive part of my life, increasingly much providing me inspiration and purpose. 22 years into my diagnosis I’m healthier than ever before and I’m continuously learning better ways to manage well. DIYA, the co-founders and people I’ve met through them, have made a very big change for me – providing inspiration, knowledge, community and friendship.
If you haven’t yet reached out to connect with other T1Ds – no matter how recently diagnosed you are or how many decades of Bg monitoring you’ve put behind – my only wish right now is for you to do so. Connect. I’m certain that it will be a beautiful change in your life – and all of us in the community of fellow diabetics will grow stronger by it. Diabetes is not something we should do alone – I did it for way too long, you don’t have to.
With a broken pancreas but lots of love,
About the author:
Marielle Bostrom is a Swedish T1D and was diagnosed as a 13 y/o in 1998. She’s currently living in Bangalore working as the Managing Director of an American MNC.