Jazz Sethi, 25 years

Hello! Who are you? And tell us a little bit more about your diabetes.

I have been living with type 1 diabetes for 11 years now! I am a professional dancer and choreographer and the founder of The Diabesties Foundation! When not working on diabetes or dance, you can find me reading, listening to music, or writing!

When I was diagnosed, I remember thinking that when I was discharged from the hospital, I would be ‘cured’! That’s what one usually thinks when one is in the hospital! Only later did I realize this was a ‘for the end of eternity’ kind of situation! It did take me a while to fully accept this new life, this new norm! I used to be scared of showing people my insulin pump or injecting insulin in public. I thought this was something I had to deal with all by myself! Over the years, I realized that this was my story, and I could live it with pride and happiness! That’s when I started the foundation—to bring those with T1D out of the darkness and into the light.

I was diagnosed when I was 13 and just entering adolescence! The worst part for me was the initial few years! My rebellious hormones made my sugars dance all day! Regular teenage problems transformed into hospital problems, school trouble became insulin struggle, fashion stigmas became hyper and hypoglycemia, 12 needles a day, diet restrictions, and other issues.

“Sometimes being different can help you make a difference.”

Jazz Sethi, India

Your treatment

How do you treat your diabetes, did a lot change over the past years and are you able to manage it well?

I receive support from my endocrinologist, Dr. Ramesh Goyal! Incredible person! He hand-held me through the first few years, and till today, I know that if I call him at 4 in the morning, he will answer! My parents have been my biggest strength and support system! They are my backbone! My friends have been so incredible. I remember the year I was diagnosed, and they all changed their diet to match mine! And now, it’s the beautiful T1D community all over the world that inspires me and motivates me daily!

To treat my diabetes, I use an Omnipod insulin pump with Novorapid and a Dexcom G6 CGM. I use a DIY closed loop.

When I was on insulin injections, my insulin used to be Novorapid, and I actually played around with several others. Lantus, Levimer and eventually Tresiba.

A lot has changed over the years since my diagnosis. There was a moment, or several moments, when the only question I could ask was, ‘Why Me?’ What did I do to deserve this? I had to re-train my body and also re-train my mind. I had to accept that this was my new normal. As I grew up, I figured out that I was not the only one dealing with this. There were people who were struggling to even afford 1 injection of insulin, and there were people struggling with the mental stress of being a type one diabetic. And slowly, the question transformed from why me… to what if?

I think I try my best to manage my diabetes. Every day is different, but I try to take diabetes one day at a time. The DIY loop has really changed my diabetes management and made it a lot easier.

Can you recognize the symptoms of a low/high blood sugar? Do you test often and can you tell a bit more about your experiences with low blood sugar?

Yes, I can recognize them. When I have a hypo, I get hunger pangs and start sweating and trembling. For severe hypos, I get numbing of lips and tongue, and confusion.
When I was using SMBG I would test about 5 to 6 times a day. I now use a CGM.

To treat my low blood sugar, I drink a juice box!! Always!

I have become unconscious twice because of a hypo! Once, I had my best friend with me, and I don’t remember any of it. I just woke up on my couch, my head drenched in sweat and my lips completely numb. The other was on a flight, and thankfully, my mother was with me! It’s all a blur now, but my sugar dropped so fast that my CGM did not have time to give me an alarm!

Food and diet

How does your diabetes affect your eating and do you find being on a diet restrictive?

What I eat changes every day. I don’t follow any particular diet. I count my carbs visually and dose accordingly. I sometimes skip meals.

Jalebi is an Indian sweet, and it is my favorite food! 😀

I love fruit as my snack. I also like Indian snacks a lot and often munch on them. I always inject, too, when I eat a snack!

I drink about 4 liters of water a day.

A diet doesn’t work for me. I think each person is different. For some, diets work very well. For others not so much. It’s never a one size fits all.

I used to get annoyed when people asked me about certain foods I could or couldn’t eat. But I don’t anymore. I use these opportunities to educate and advocate for T1D. It’s my favorite thing to do. 😉

Do you believe that a plant based diet can improve diabetes? Did you ever experiment with this?

I went vegan once for 21 days but didn’t see many changes in my sugars. Moreover, I did not enjoy it much! I don’t follow a diet like I said, but I eat in moderation. I have nothing against diets, but it doesn’t work for me personally!

Do you have a hard time eating out in a restaurant? And what are you thoughts on making this easier?

I don’t. As long as you know what works for you, it’s easy! I know that certain foods make me spike, and I avoid those. I count carbs and inject accordingly. I personally do not like going out, but I love sushi!!! So, if I were to go out, it would be for sushi.

“You’re not alone.”

Jazz Sethi, India

Exercise and work

Does your diabetes restrict you from exercise or your daily job?

I love to dance!!! All day, every day!

I run The Diabesties Foundation full-time! And I also direct choreography productions. Dancing does affect my sugars, but with the DIY loop, I avoid going low.

Final

Do you have any positive or negative effects because of your diabetes?

I have realized over the course of years that a happy mind leads to a healthy body. Especially with diabetes. Any stress or anxiety directly impacts my sugars. I try to focus on my mental health greatly, to ensure smooth readings.

The hardest part about having diabetes is the element of surprise. You could do everything right, eat all the right things, and still have highs and lows. And sometimes, that’s just not in your control. And that’s what leads to burnout.

The best thing is that it gives you so much discipline. It makes you strong. I found my purpose with my diabetes, and I will forever be grateful for that. It gives you a lot of perspective. It gave me empathy, and I believe that’s the biggest agent of change.

India is full of taboos and stigmas when it comes to T1D. I use these opportunities to educate.

What is the best advice that you can give to non-diabetics, new diagnosed diabetics and diabetics?

I would like them to know to classify diabetes into an overarching bubble. That there are different types and what that entails.

You’re not alone.

It may be a bad day, but it’s not a bad life, and that sometimes ‘being different’ can help you ‘make a difference’.

What would you ask the other diabetics?

How will you use your diabetes to make a change?

Share your thoughts in the comments. I cannot wait to hear from you!

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