Testimonial

Jazz Sethi

India
People with type 1 diabetes shouldn’t have to feel inferior or less abled. They shouldn't have to be worried about being the ‘bad son’ or finding a partner. Inclusion is a right, not a privilege for a select few.

How long have you been living with diabetes?

I have been living with type 1 diabetes for 12 years.

How were you diagnosed?

I was 13 years old and getting ready for a football match. We had daily practice sessions and I begin feeling very thirsty, weak, cramping and losing a lot of weight: symptoms I associated with my strenuous routine. My mother noticed my drastic weight loss and we decided to get a few routine checks. I was immediately rushed to the emergency room where my blood glucose was measured at 1050 mg/dL. I was moved to the ICU where I was diagnosed with type 1 diabetes.

Did your diagnosis come as a surprise to you?

It was a surprise to all of us. None of us knew that there were different types of diabetes, let alone that someone so young could develop it. I guess you get into auto-mode when something like this hits you and your family. The shock seeps in when you realise that you have a new 'normal'.

How did your diagnosis affect your family or loved ones?

Its hard to see someone you love go through any kind of pain. Seeing me taking injections everyday and going through highs and lows was especially difficult on my parents. However, they never let that show and have always been my rocks. They were strong for me in every way possible - waking up to check my blood glucose in the middle of the night, syncing their clocks if they were out of the country, pushing me to try new technologies and just emotionally letting me know that I'm going to be okay.

What are the most important things that have supported your diabetes care?

Peer support. Starting my own Foundation was my way of making "dia-buddies" and that has taught me a lot. I truly believe that living with any chronic condition requires three primary things: access to a trained specialist, self-management and peer support. When you hear success stories, similar struggles and voices from lived experience, it truly makes you believe you are not alone.

What has living with diabetes taught you the most?

Type 1 diabetes teaches you more than it takes away from you. It did take away my body's ability to produce insulin, but it has taught me grit, discipline, courage and lots of gratitude. I honestly do not remember life without type 1 diabetes and I am what I am today purely because of 'This Ability' (not disability).

What has been your lowest point with diabetes?

While I was growing up, I was not confident enough to 'show off' my diabetes. I used to be scared going through airport security with my pump and would leave the dinner table if my type 1 diabetes was brought up. Those moments of shame, embarrassment or just complete lack of confidence took their toll on me. Slowly, I began to accept what life had gifted me and used that to fuel my journey.

What would you like to see change in diabetes over the next 100 years?

It's never just about insulin. If a child is given free insulin, but has no idea what to do with it, it's like having no insulin. We need to create a system which supports people with type 1 diabetes holistically - with education, support, counselling, transitional care, hand holding and access to medication. Its not 'Either, Or' it should be 'Both, And.'

What do you think needs to change to improve the lives of people living with diabetes in your country?

The impact of type 1 diabetes on me and my perspective on it started to shift when I heard stories of other people living with the condition. I came across a man in a village at a health camp we organised who had two sons, one of whom lived with type 1 diabetes. His other son passed away in an unfortunate accident. He said to me, “My son died, but sadly my ‘good’ son died”. A girl from Rajasthan, was turned away from marriage proposals multiple times because she had type 1 diabetes and a hearing disability. Other people thought she was ‘flawed’. In a moment, everything I knew about diabetes dissolved. I had never been introduced to stigma in such a striking and direct way. It was in that moment that I identified the place of privilege I was viewing my conditions from. This shifted my perspective greatly. People with type 1 diabetes shouldn’t have to feel inferior or less abled. They shouldn't have to be worried about being the ‘bad son’ or finding a partner. Inclusion is a right, not a privilege for a select few.

What does the centenary of insulin mean to you?

It's an ode to Banting for literally giving us the gift of life. I believe insulin needs to be the hero of our stories and this year truly proves how important it is for us to stand up and speak up to ensure affordability and access. It's a reminder of how far we have come in such a short period of time, but also how far we still have to go.

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