More than Numbers
India has become the ''Diabetes Capital of the World'', with 61 million people living with diabetes. Numbers are important, but they are just the tip of the iceberg when it comes to the challenges of living with diabetes
For most, people believe that diabetes is a disease of too much sugar consumption. For the rest, they know it as something that the grandfather had and they believe it will run in families. In a generation of advancing technologies where communication is so easy, why are we still allowing ourselves to be dragged down by the age old myths that darken the lives of people with diabetes? Amidst all of these misconceptions, we need to educate others about the challenges and inequalities that people with type 1 diabetes face.
Treatment of diabetes and its complications is a major challenge in India, due to several factors, including socio-cultural issues, lack of appropriate facilities for diabetes care, an inadequate health system, and poor monitoring and follow-up of patients especially in the rural settings.
Today, three in four people with diabetes live in low- and middle-income countries, where many lack access to diabetes care either because it is not available or not affordable. The Indian health set up has different angles to its healthcare. Basic government programmes work on providing free health services at government hospitals. Insulin supplies of regular and intermediate acting are available, but are not sufficient to be able to serve the community.
Stories of Struggle
As a type 1 diabetic, I have a deep desire to explore how we can overcome some of these real challenges of diabetes. So, I began my journey to get in touch with young kids and adults living with diabetes in my country. My experience has taught me that there are unfathomable stories to share, profound emotions, and inequalities faced by so many people in India living with a chronic illness.
Sadly, in India diabetes is considered a flaw and it is a big taboo, especially for women. It is a disease that raises innumerable questions by those in society. There is a saying: “beti bachao, beti padhao”, which roughly translates to “save daughter, teach daughter”. In recent years, the government of India has promoted this saying as a social campaign to create awareness and improve the welfare of girls in the country. This has brought a new meaning to female equality and rights. However, even today women – those with diabetes in particular – face some really tough experiences.
Living with diabetes, we all went through phases of grief. When we decided to finally accept our disease, the Indian cultural society gave us a different response. Most of us hide our disease. This is difficult to say, because we should not have to, but it’s the reality. Many marriages are broken and many females face rejection once they are labeled with type 1 diabetes. It somehow becomes a complete definition of you, it covers your character and personality and causes people to judge you.
Below I will share with you some quotes from my meeting with some empowering young women living with diabetes in India. These ladies have not just had a hard time with access to insulin and affordable healthcare, but they have also faced discrimination due to the society we live in.
“I did a lot of hard work to get a secure job, studied day and night for it. Then one day I was on the seventh cloud because finally I was having that job I dreamt for in my hand. The interview went awesome as well. I got the joining letter and that’s the point where all the happiness turned into sadness because they mentioned a clause that Type1 diabetics are unfit for that role. I would like to mention it was a sitting job (IT officer). I still don’t understand why. What is there that I can’t do and a ‘normal’ human being can? Though diabetes never stopped me, the society always does. This is just one example, I am sure we all have a trillion.” -Neha
“I faced multiple discriminations at various stages of life. There were instances when as soon as someone got to know of my diabetes, they would stop interacting with me, highlighting the myths people have about diabetes being a communicable disease. I was lucky enough to have found my life partner in my best friend who bravely faced various societal pressures to be with me.” -Deeksha
“Diagnosed with type 1 diabetes at 14 years along with alopecia and autoimmune thyroiditis, it's been really hard for me to accept it. I couldn’t cope with school, and because of this I suffered from depression. I was absolutely broken from the inside, and people used to taunt me that I would stay alone for life and won’t survive for long. They couldn’t understand what I would go through everyday. I started writing my feelings on paper as I had no friends. I was forced to leave school as I just couldn’t be myself .” -Sanskriti
It’s a poor strategy when we talk of healthcare in developing countries. The data looks too enchanting and makes some people believe that we have come a long way. In reality, everything is a function of money. If we have money then we can have the right to live. How is this a fair society? Access to insulin is flawed. Type one diabetics can only survive on insulin and still we are forced to pay too much out of our pockets to live. As a women in India, we face extra burdens. It is not easy to be open about our disease. We are questioned every day and face inequality at the time of marriage. It won’t be easy at all, but we will keep fighting for a more equal society on all levels.