My First Diaversary and the 6 Things I Learnt
“You can’t connect the dots looking forward you can only connect them looking backwards. So you have to trust that the dots will somehow connect in the future. You have to trust in something: your gut, destiny, life, karma, whatever. Because believing that the dots will connect down the road will give you the confidence to follow your heart, even when it leads you off the well-worn path.” – Steve Jobs
This time last year I was shit scared with all the known symptoms of Type 1 diabetes and an appointment with an endocrinologist on the 21 of October in 2015. How much life has changed since that day is quite significant and as I sit today approaching my first Diaversary I would like to pen that down in the hope that this resonates with the diabetes community globally. Below is a list of things that I have learnt in the last 365 days –
It’s not my fault –
Being diagnosed with a lifelong illness that has no known cure can be depressing and knowing that your own body quit on you can leave long-term emotional and mental scars, knocking the confidence out of anyone. Why me? Am I alone? What did I do to get this? Can’t be me, surely it is a misdiagnosis? Are some of the thoughts that ran through my head and the word “auto-immune” was the biggest positive in the mess I found myself in. Knowing that I could not have done anything differently was the power I needed to change my mindset and start my road to recovery and to normality (whatever normal is!!)
Get use to the lingo and gadgets –
OMG!!! Having Type 1 diabetes is like learning a new language and feels so cryptic and mind boggling at first – insulin, antibodies, basal rate, CGM, blood glucose, bolus, c-peptide, callus, carb count, dawn phenomenon, dextrose, DKA, endocrine, HbA1C, beta cells, retinopathy, glucagon, hypoglycaemia, MODM, Nightscout, test strips, MODY, MDI and the list goes on (WHO TALKS LIKE THAT)?! I personally love the statistics and the gadgets and have used data analytics to control my blood sugar and I meet many people with fear of numbers and more importantly feeling like a number. If I can help in this space, that would be awesome – but the biggest takeaway is – “If you can measure it, you can control it.”
Family is family after all –
One might have 600 friends of Facebook, 1000 followers on Twitter and Instagram but when it came down to it, it was only a handful of people who stood by to support me through the months before and especially the first few after diagnosis. My mom, dad and sister did everything and more to support — they stayed with me, cooked me food, listened to me moan and lived every minute of my suffering with me (they still come up with random cures and we now laugh about them). A special thank you to the handful of friends without whom survival would have been difficult especially when my family lives in India and I live in the UK and most importantly for treating me no different than before.
Who says social media is bad? –
I became a sponge for information immediately after my diagnosis and this is to say a massive thank you to anyone writing a blog, posting a YouTube video, sharing a photo or even a tweet of their journey – “IT IS INCREADIBLY POWERFUL”. I learnt more from social media then I could have learnt from books or my doctors. Please keep posting as you never know who is reading and the lives that you help by inspiring and sharing your journey. My first game changer was going to a GBDOC Conference in the UK and meeting other diabetics like myself. Meeting others and sharing notes and realising that they “actually exist” and are real is empowering.
Communities care and help –
I felt so strange registering for my first ever GBDOC conference or registering with DIABETES UK to cycle from London to Paris. I was surprised to meet Emily from JDRF and organise a call with Michelle from Beyond Type 1 or that I’d be sending my first letter to my T1D pen pal Sara. It all felt awkward — there was a fear of being misunderstood or becoming part of some weird community. But as soon as I met the people and had the phone calls, all those fears evaporated quickly and there was a sense of belonging and being understood. Meeting other people your age who were going through the same thing if not more difficulties made a massive difference. Positivity is infectious and far reaching, and I found communities with this type of mindset made the most profound impact.
Enjoy the now –
I don’t know about you but I use to spend a lot of time preparing for future opportunities and challenges and not really living in the now and enjoying the little things. Yes, we all have bad days, and yes, things are not perfect all the time, but they were never that way before my diagnosis, too. A lot of my materialistic ambitions have fallen off the wayside and a lot more new things keep cropping up that amaze me and keep me going. Diabetes is relentless and so should be our drive to live a full life and achieve everything we ever wanted.
I still feel like a newborn in this space — I am still learning more and more every day and documenting my journey. Inspiring others is the best way I know of to keep myself going every day. I don’t think I had a choice, neither do I think any of us did. Sometimes life burns you down to the ground and you have you pick up the pieces and rise from the ashes like a phoenix.
This first year has been an amazing year. I have met some amazing people and done some amazing things so there is no reason not to celebrate my first Diaversary.
Thank you all – It really is a small world and we are connected in ways that are hard to explain sometime. Looking forward to the next year and what opportunities and challenges it brings my way.
Read “You Have Sugar” — Being Diagnosed with Diabetes in India by Siddharth Sharma.