A life of sugar and spice

Youngsters share their stories of living with Type 1 diabetes

The memory is fresh in Upparapelli Venu’s mind. The 14-year-old was being treated for body pain. “It was hot those days so I had a lot of cold drinks during that period,” he recalls. While being treated, his sugar levels went alarmingly high that he slipped into coma. “On the third day of hospitalisation, my sugar level was 1120! Doctors told me I was very lucky to have been alive,” he shares. The youngster was diagnosed with Type I diabetes and has been taking insulin shots since then. On November 14, which is observed as Children’s Day in India and World Diabetes Day, youngsters affected by Type I diabetes share their tryst with dealing with the disease.

Dhishana Kidambi, a Type 1 diabetic herself founded an NGO called Sweet Souls where affected families can come together, learn from each other’s experiences, offer support and guidance to the newly diagnosed families. Her mother Nalini Kidambi, trustee of Sweet Souls regularly counsels parents and shares her own experiences. “We at Sweet Souls use every opportunity to educate families and empower the child,” states Nalini. She affirms how difficult it is for parents when they discover their child is a Type 1 diabetic. “We all go through that phase and wonder why it happened. It is tough for a parent but nothing comes out of brooding. One needs to empower, move on and take charge of the situation,” she points out. That positive attitude is what keeps Dhishana active and now the youngster is studying in the USA; she has even formed a campus chapter of college diabetes network there.

The disease can be isolating as the social stigma makes it tough for these youngsters. Malavika*, who is preparing for her GMAT exams shares that people with no awareness get extremely judgemental and pass offensive comments. “They remark that it is because of an unhealthy lifestyle that we got Type 1 diabetes. Instead of offering support or boost one’s morale, they try to put you down,” she points out and adds, “because of this social stigma, one remains anonymous.” Venu also remarks that other people’s behaviour can make things worse. “In a group, some people remark that you have to be very careful; they also keep me away and constantly ask me to take rest as if something bad has happened to me. It is embarrassing and also depressing,” he observes.

Living with diabetes complicates one’s life but Malavika asserts that her inner strength has helped her not to fall apart. “I had a fear of injections and initially cried a lot; even my parents cried. Now I just think it as three pricks a day and don’t even bother. When Diabetes says, ‘I am there dude’, I retort ‘Shut up! I am stronger than you.’”

Nalini speaks of challenges and says many parents think that it is something that will go away after puberty. “We also counsel people, who try alternative therapies like acupressure, to never miss the insulin shots for the child.” She states once there is acceptance, the outlook brings a different perspective. “There is a turning point in the youngster’s life when he/she accepts the condition and takes charge of the situation. Once that happens., there is no looking back.”

(*Name has been changed on request)

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