(Re)learning life with adult onset T1D

Four and a half years ago, exactly 3 months and 6 days before my birthday, my pancreas decided to give up on the lifelong commitment it made to work. While my best friends planned my birthday (they were planning three whole months in advance), I sat on a hospital bed trying to navigate my way forward.

I had a broken pancreas and unlike a heart break, this one wasn’t going away.

Having been diagnosed in my mid-twenties, I had adult onset type 1 diabetes. Even though I have met and connected with some amazing fellow type 1 diabetics over the years, my journey so far has been slightly different.

To begin with, I was initially misdiagnosed as a type 2 diabetic.

On the day of my diagnosis I was admitted in the emergency room with DKA. I was given insulin initially but as I got back home and my parents went for a second (and a third) opinion, the doctor put me on oral medication, saying he was certain I was a type 2 based on nothing but my age. Unfortunately for me, this coincided with my honeymoon period and I was off insulin for a good part of the year. For obvious reasons, my parents heaved a sigh of relief thinking that as long as this doesn't require her to inject insulin, it's fine (that thing about type 2 being better than type 1, you guys know all about it). But as I read more, I realised I might in fact be a type 1 and this 'no insulin requirement' was a temporary phase. However, convincing my parents about this was another ball game. Maybe under society pressure or their own fears regarding how life was going to pan out for me, I was put on alternate medicine in the hope that I would be 'cured'. While I have always been very pally with my parents (they truly are the best), this one time, I had to rebel to get them to understand the exact situation and of course you can imagine how things went down from there.

I wonder sometimes if I would have had it in me to question my parents' ways of my diabetes management, had I been diagnosed as a kid or adolescent.

While it’s true, type 1 diabetes occurs majorly in young kids, it’s a myth that adults can’t have type 1 diabetes.  I later realised that a simple C peptide test would have helped to determine if I was a T1D or not.

If I had to describe my journey with diabetes in a sentence I would say, I had to unlearn life to relearn to live with diabetes.

My diagnosis and the subsequent confusion about type 1 vs type 2 made me lose a couple of months at work. The first day I went back to work after my diagnosis, it hit me just how much had changed and would continue to change. When my fellow workers decided to go out for the usual Wednesday Dominos lunch I knew as much as I tried, things had changed majorly. And over the next few months, every new day brought with it a new learning. And hence I said, I have had to unlearn everything about life I had learnt so far to relearn to live with diabetes.

I struggled to align my career with diabetes management and failed at first. When I chose my profession as a 14 year old, I didn’t have a broken pancreas to factor in. But post diagnosis, I was in a soup.  Everything I had been working towards for the last couple of years didn’t entirely align with what living with diabetes entailed. And it took me a while to even understand that. My parents who had always placed all the focus on helping me grow in my career now focused on getting me “settled” (you heard all about it in the December rant here). Needless to say, I had to literally fight to get my way here as well. And I am so glad I did!

And since I haven’t met too many adult diagnosis T1s, every time I meet a new T1, despite living with the same condition, I find it hard to relate with them completely.

I have always wondered, would it have been any easier had I also been diagnosed as a kid?

I am not saying that it doesn’t have its own share of struggles (living without popping gems in your mouth at your whim, I don’t even know how I could have lived my teens without hogging on Nirula’s ice cream sundaes as my girlfriends and I discussed our crushes and math exam passing strategy), but I still wonder would that have made any difference in the career or life choices I had made? As a 14 year old, I thought I knew my calling was to be a CA. My father, a practicing CA himself made it his dream too. For close to 4 years, he became the wind beneath my wings as I pursued a regular undergrad college degree and slogged it in my internship at office for 4 years. There was no way I could have pulled that off with diabetes management as a side job. Technically I was doing two jobs anyway. Hence I often wonder about the timing of how things unfolded. When I was diagnosed, I was on a study burnout, contemplating my career choices (you know how they say you are too young to be in love at 14, turns out it holds true for career choices as well!)

It’s taken me this long to make peace with everything that went down. I took my time to figure out a career, my happiness, my people, and I still continue to figure things out. I am not saying that maturity is a virtue I have mastered but being diagnosed in my 20’s meant that I had certain control with regards to food, exercise(!) or the life choices. Knowing the person I was back in school, pretty sure I wouldn’t have made it out alive being a diabetic. But then it would have helped because I might have picked a career (or made better life choices in general) that would have aligned with diabetes management much more easily than what I aspired. There are always pros and cons to the entire situation.

So as of today, unlike a lot of people I have spoken to from the awesome community I call my T1D family, I don’t think I have any regrets about the last 4.5 years. I have done things I am pretty sure I wouldn’t have done otherwise (I willingly go for walks/runs now! I even ran at the Type One Run Pune! It’s not normal, I am telling you guys). I am liking who I am becoming. I feel like I have been handed down a perfect deal. Like I have had best of both worlds. And unlike what people say, I am loving and living my life. A lot better, if that helps!