We always knew Jim (name changed) had diabetes since he was 8 years old. He always liked to do his bits, as he called it, that is measure his sugars and inject insulin away from everyone. He needed to do this multiple times a day and carried sandwiches with him all the time. We were always inquisitive about him and over the years had got used to his fluctuating moods, hospital stays and frequent absences from social gatherings.
He had grown into a successful young man, despite changing jobs frequently and had begun to age gracefully. He was gregarious and funny and loved the good life. He did talk about his illness, but usually ended abruptly saying that unless one experienced it, one wouldn`t know. Dream big, he did and sometimes too big and needed to be bailed out financially on a number of occasions. He did not like people visiting him when he was ill, but enjoyed the phone call.
He was much loved by friends and colleagues alike and nobody really minded his shortcomings and liked him for who he was. One thing that stood out was his sudden bursts of rage, which was worrisome. Amongst friends, his positives were him and his negatives were his sugar, as if there were two different people who were in one body. Of late he was getting ill more frequently.
It was only apt that I asked him to write this piece about his experience with Type I Diabetes. At first, he said that he did not have time to sit down and write, but would share some insights later on that day. I even offered to ghost write on his behalf. At the prearranged time of the phone call, he sent me a text that he did not wish to play any further part in the interview and wished me luck with my post and to write from what I knew.
A couple of days later I rang him to find out what had happened. “Diabetes is a big stigma. It is something that I do not discuss outside my very close circle of family and friends. It makes me look vulnerable and weak and may give my employers a chance to take an unkind stance in case there is a problem. I do not wish to have my name anywhere.”
In today`s day of extensive use of social media, on an average I read about 10 stories of people with diabetes a day. There are multiple forums on which people openly discuss such problems. I was shocked to see that 72% of people with Type I diabetes felt stigmatised.
Diabetes awareness and education is far from being anywhere near completion. It is not just that the affected people need to know about the disease that academic institutions and employers need to know that these people can live life and contribute as effectively as anyone else. Most importantly, people with diabetes need to feel reassured that the community at large understands this.
There is a big need for peer and institutional support. Organisations like the Diabetes UK, International Diabetes Federation, American Diabetes Association have been working tirelessly in this field. It’s time for all like-minded people to join hands and educate all stakeholders using all available channels. Mobile Platforms will be particularly useful for both social and disease support.