Jyotsana Rangeen

The simplest decision of how you want to live your life with diabetes has the power to change your life as it changed mine.

How long have you been living with diabetes?

Almost 5 years. I was diagnosed with type 1 diabetes on 15 December 2015 when I was 21 years old.

How were you diagnosed?

I was working with a Technology Education company and was really enjoying my work of teaching tech stuff to K-12 kids. It was a dream job and I couldn't have asked for something better to start off my career. But then one day, I started feeling off. I was always exhausted and started drinking gallons of water without realising it. Doing simple things of my everyday routine became difficult. I didn't even have enough energy to climb a few stairs. I lost around 12 kilos in a span of two weeks and was looking very ill. As I was constantly getting throat pain, I went to the doctor who gave me a long list of tests to be done. I got all of them except diabetes, thinking how can a young 21 year old girl get diabetes. All the other tests came back normal and the mystery continued. Then right before New Year, I heard the word "Diabetes" at the hospital. This left me in complete shock and despair. My life turned upside down in a matter of few days.

Did your diagnosis come as a surprise to you?

Absolutely! Before I was diagnosed, I didn't even know what 'type 1 diabetes' was. I thought or was told that only old people get diabetes due to eating lots of sugar. It was the darkest period of my life as I was totally clueless of what life had thrown upon me. It was a big change for a 21 year old, particularly a very active young adult and professional dancer. Having to deal with a condition you know nothing about is challenging. The month following my diagnosis was the toughest period of my life, having to adjust to multiple daily injections and blood glucose fluctuations. I started researching about my condition and spent much of my days reading. The information overload made it worse for me to accept it. I spent countless nights bursting into tears on my bed cursing my fate, feeling alone and helpless.

How did your diagnosis affect your family or loved ones?

When the doctor broke the news in the hospital that I had type 1 diabetes, my parents and sisters were completely confused and shocked. They had only heard of type 2 diabetes and didn't know the difference between the types. It was initially very hard for them to see me struggling for my life in ICU and coming to terms with the fact that I had a life long condition and would need to take insulin to survive. In India, there is a taboo associated with taking insulin. Like any other parent, they were quite stressed out and very scared about my future.

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

Despite the multitude of challenges and obstacles that life has thrown upon me, I have had the privilege of having a lot of supportive people. My family and friends helped me in dealing with a lot of challenges, fears and inhibitions. I will always be grateful to them for that. The most important thing is that they don't make me feel different, which has helped me to accept and embrace my condition in a good way. I owe my life and happiness to a wonderful diabetes community in Delhi - 'Diabetes India Youth in Action' and 'Diabetes in Style' - who have really changed my life for good. All my incredible type 1 buddies have helped me change my perspective towards the condition and motivated me to become a fighter and not a victim. Through the power of community, I managed to regain my confidence and will to live life successfully without any fear or limitations, away from the stigma and misconceptions surrounding diabetes.

What has living with diabetes taught you the most?

I learned the important lesson that "I can't change the fact that I have diabetes, so I need to embrace it fully" After hiding it for years due to the social stigma and restrictions that came in all forms, I decided to take control by accepting and by being open about it. I started sharing my journey and life with diabetes on social media. This made me feel liberated and turned this baggage into an opportunity to help others going through the same feelings. I started volunteering by spreading awareness, educating the newly diagnosed and conducting diabetes camps to foster a supportive and collaborative environment of young and empowered individuals. Diabetes surely teaches you patience and discipline. The simplest decision of how you want to live your life with diabetes has the power to change your life as it changed mine.

What has been your lowest point with diabetes?

Diabetes can be very hard and challenging! It was hard for me to accept and adapt to a new lifestyle. At one point I started getting negative thoughts like 'This is the end', 'why did God do this to me?', 'What have I done wrong?', 'Will I survive long with this'? Slowly and steadily I went into depression due to denial. I left my dream job for no reason and blamed diabetes for it. I fought depression for six months and it was the hardest period of my life. I decided to move on and with rays of hope, light and positivity, took another job. But then destiny had something else in store for me. I got a call from my sister on the day of my onboarding and heard the dreadful news that my father had been diagnosed with 3rd stage colon cancer. My life stopped for a moment and I was filled with confusion, panic and fear. It was really the hardest part of my life. My condition took a backseat and my father became the priority, fighting a bigger battle of life and death.

Have you ever experienced issues accessing diabetes medicines, supplies and care?

The burden of affording insulin and essential diabetes supplies is far more challenging than the condition itself. In India, there are no insurance policies for people living with type 1 diabetes. We have to manage and buy everything ourselves. I come from a middle-class family and manage my own expenses, The cost of living with this chronic condition is a huge burden. There have been many months where I've had to cut down on my personal expenses to be able to afford the supplies. I don't wish to put the burden on my parents to manage my medical expenses, and have to work hard to be able to afford the monthly costs.

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

I believe that lack of awareness and adequate education is as dangerous as lack of insulin. Over the past few years, we have been able to bring change through our combined efforts to educate the public and spread diabetes awareness. But there is still a lot to be done. Due to language and other barriers, the underprivileged sections of society lack basic knowledge and education about managing diabetes and basic hygiene measures to improve quality of life. Most children are diagnosed way too late and suffer acute complications due to unawareness. There is no national registry of people living with type 1 diabetes in India and half of the stories get lost even before they are shared. Many people affected struggle on a daily basis to afford insulin and receive adequate support from the health sector. This needs to change before it's too late.

What does the centenary of insulin mean to you?

For me, the 100th anniversary of insulin's discovery is a stark reminder that people living with diabetes in low and middle income countries still struggle to access this life-saving drug. More than a celebration, it's a day where a poor mother curses her fate and God for giving her child this deadly condition for life, forcing her to take the difficult decision of either buying expensive life-saving insulin or feeding her child. As much as we are grateful for the discovery, we wish to see a future where no one has to struggle for a life that they deserve to live!

The Insulin at 100 campaign is supported by