My name is Jazz Sethi and I’m from India. For 12 years, I have lived with Type 1 Diabetes and for 3 year I have lived with Diabetes Insipidus. I'm sharing my story because I believe life is too 'sweet' not to be shared.
I run The Diabeties Foundation in India, a global movement to make those with Type 1 Diabetes feel heard, understood, supported and celebrated - with a dedicated Youtube channel, monthly meet-ups, Awareness tours, education programs, advocacy drive and several other creative projects.
I am also a professional performance artist and on a never ending quest to deliver impact
28 May 2021
“The two most important days in your life are the day you are born and the day you find out why.”
- Mark Twain
I was born on 31st March 1995, and born again on 2nd January 2009. The day I was diagnosed with Type 1 Diabetes is etched in my memory with piercing clarity. After 12 years I still recall the colour of the hospital walls, the beep of the ICU machines, and the nonchalant way my doctor announced to my parents, “Yes, so she has Type 1 Diabetes.”
This news hit our family like a tsunami. Suddenly, everything I knew about life, had to be looked at through a new lens. I had to un-learn habits I spent years forming and re-learn daily tasks with extra care and caution. And the part that hit me the most - it was endless.
Living with an invisible chronic condition is like having to constantly balance a balloon. Daily having to deal with the peaking highs and crashing lows, having to inject insulin just to stay alive. It took time to make peace with my new invisible companion. And just when it seemed like I started learning how to swim in this sea, another wave crashed.
8th April 2019 I was diagnosed with Diabetes Insipidus - something that has nothing to do with Type 1 Diabetes (petition to change name). Another NCD, and again, as a family, we entered the hospital to undertake another journey into the unknown. The treatment for DI is a lot simpler than T1D (my life was suddenly full of acronyms), but the acceptance was a little harder. What I struggled with for years, to get rid of the ‘why me’ feeling that Type 1 brought, made an unwelcome return.
My entire adolescent life I thought I was ‘different’. I was living with two unrelated ‘diabetes’, yet the one commonality was, I had to rely on something external just to stay alive. When I would finish making a T1D decision, DI would knock on my door and remind me to give it attention. I felt lost, confused and alone. It was only a decade later, that I realised being ‘different’ could help me make a ‘difference’. I wanted to assure people, that no matter how impossible dealing with multiple chronic conditions felt - it was doable.
And the day I realised that, I found out why I was born again.
28 June 2021
We are all born, then we are born again when we are diagnosed with an NCD and, I believe, we are born a third time, when we have that one moment which urges us to think about others living with similar conditions.
For me, the impact of living with Type 1 Diabetes and Diabetes Insipidus,including my self-absorption with these conditions, started to shift when I heard stories of others living with NCDs. I came across a man in a village in Kutch (Gujarat, India) at a health camp we organised who had two sons, one of whom lived with Type 1 Diabetes. In an unfortunate accident, his other son passed away. He told me, “My son died, but sadly my ‘good’ son died”.
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, which shifted my perspective greatly.
Living with multiple chronic conditions is difficult - but I had been fortunate to have never faced overt stigma and didn’t struggle with accessibility. When I saw that disparity was such a stark reality in India, my diabetes, turned into our diabetes. A girl from Rajasthan, was turned away from marriage proposals multiple times because she had T1D and a hearing disability - people thought she was ‘flawed’. Suddenly I saw glaring gaps - visible because I focused on them and not myself. And when there are gaps and one can actually do something to bridge them - even partially - then well... they must be bridged. And in trying, the staggering ‘why me’ turned into a hopeful ‘what if’.
With my organisation, Diabesties, I found comfort in making individuals with diabetes smile, I felt satisfaction in holding the hand of a family member who was scared and creating a community that is built on empathy, courage and strength. We are focused on delivering impact through education and community support - making those who live with diabetes, often in addition to other chronic conditions, feel a sense of ‘belonging’ - hence being each other’s ‘diabesties’.
People with multiple NCD’s shouldn’t have to feel inferior or less able, they shouldn't fear being the ‘bad son’ or be worried about finding a partner - for inclusion is a right, not a privilege for a select few.
26 July 2021
“The health of anyone anywhere, is the health of everyone everywhere”
- Professor Richard Skolnik
The NCDs I live with do not discriminate. The occurrence of Type 1 Diabetes and Diabetes Insipidus has no boundaries and does not depend on race, gender, class or age. My schooling enabled me to think critically about this, and ask myself: “If I have access to life saving medication living in a major city, be it insulin or desmopressin, why does the girl living in Jamnagar (Gujarat) - a small town in the same state ‑ not?”
We often take ‘access’ for granted with the thought that those who have lifelong conditions should be able to access life-saving medication. This is unfortunately not the case, and we require clear government policy to ensure that health is not a privilege, but a right!
Aside from the fundamental right of access to affordable and quality medicine, there is a realisation that living with multiple chronic conditions also requires education, mental health support, peer support, professional development of general practitioners in rural and urban cities, research, policy and active awareness.
I once spoke to a girl who was in hospital with Diabetic Ketoacidosis every month. I asked her, “Haven’t you been taking your insulin?” She replied with a naive, “I take it once a week.” She had access to insulin, but no access to quality diabetes education. Added confidence, that comes with education in one’s condition, has a direct link to breaking stigma.
We need a health system with a 360-degree management arc. We need a health system that looks beyond the ‘patient’ and understands the needs of the ‘person’.
“Patient driven movements” have proven to shift conventional protocols and practices. An example includes the “We Are Not Waiting” Type 1 Diabetes movement where DIY artificial pancreases have been created, challenging industry to pick up the pace in rolling out newer technologies. They didn’t wait around hoping for change - they went out and did it themselves.
I urge those living with multiple NCDs to narrow in on the places you feel the health system is lacking. For me, it’s been access to life saving medication, stigma and lack of education - and then do whatever you can in your power, even if it means helping one other person, to make change. The circle of influence will increase and slowly, so will the impact.
Because as the saying goes, “You rise, by lifting others”.
For 12 years, I have lived with Type 1 Diabetes and for three years I have lived with Diabetes Insipidus. I share my story and the story of others in my community to encourage decision-makers to better shape health systems around the needs of the ‘person’. I believe that life is too ‘sweet’ to not be shared, and in the case of people living with NCDs it is our stories that can shape the NCD response moving forward.
Jazz Sethi, lived experience of diabetes, India
About NCD DIARIES
The NCD Diaries use rich and immersive multimedia approaches to share lived experiences to drive change, using a public narrative framework.