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Talking about diabetes is fundamental says Ben Rolfe

“Dad please. You can’t tell anyone. I don’t want anyone to know!”
“But darling, you’ve got to tell people. You can’t just brush it under the carpet forever. People need to know. What if you have a problem?”
“But what if they think it was my fault?” Sobs.
“Of course it’s not your fault darling.”
“But look!! This Snapchat from one of my friends.” A massive slice of chocolate cake on the screen accompanied by the hashtag ‘#diabetes’.

Chances are if you have a social media account you’ll have seen a photo of some Easter Eggs or a pile of sweets or cup cakes with the caption #diabetes. It might seem like a harmless joke to most, but to my daughter it is a metaphorical punch in the face.

My 11-year-old daughter Alice was diagnosed with Type 1 diabetes on 23 December 2013, and on Christmas Day one of her friends took a Snapchat of a big plate of cake and accompanied it with that very caption ‘#diabetes’. Now imagine, two days after you’ve been diagnosed with a life-changing and potentially life-threatening condition which you developed through no fault of your own.

Turmoil of emotions

Imagine in what sort of place your mind is – a turmoil of emotions I likened at the time to the first stage of grief (and believe me, all the other stages followed). And then imagine how this seemingly harmless Snapchat feels to the recipient of said diagnosis. The temptation therefore post diagnosis was to retreat into a shell, hide it away from the outside world and pretend it hasn’t happened.

There’s an element of stigma associated for anyone diagnosed with diabetes. Type 2 diabetes is often associated with certain poor lifestyle choices and has grown to epidemic proportions. With the associated drain on nationally funded health services, Governments are trying to educate their populations to make healthier choices in order to try and head off this crisis, and occasionally there is even a bit of press about people reversing their diagnosis through healthier lifestyle choices.

Instinctively however, even through the pain that I was going through on behalf of my daughter, I knew that we had to educate everyone as to her condition, mainly because I was concerned that she would have a hypo (low blood sugar) at school and that everyone would know how to deal with it. I had vague recollections from 20 years previously of a boyfriend of my sister who was Type one being arrested for drunk and disorderly when in reality he was having a hypo, and had to be treated by the Police doctor when he passed out in the cell and they saw his emergency bracelet.

Spending hours explaining Type 1 diabetes to teachers

My determination to be open and make others aware was reinforced when Alice was drinking a Lucozade in music class to treat a hypo in the first month post diagnosis and when the teacher asked why, he retorted that she had caused her diabetes through too many fizzy drinks and sweets. My wife and I spent hours with her teachers and the school staff educating them about Type 1 diabetes, and we have just gone through a very similar process when she finished College and went up to the Lycee to pursue the Bac (equivalent of A Levels).

Alice herself frequently suffers from something akin to “discrimination” in her daily life. Whether it be the refusal from an uninformed teacher to let her go to the toilet mid class because she has high blood sugar, or that a well meaning parent might question whether she should have a slice of birthday cake at a party. I want to create as much awareness as I can for purely selfish reasons, so that Alice has to deal with comments like these more and more infrequently.

Later on was the realization that being open and talking about the condition was beneficial from a psychological perspective. Diabetes is 24/7/365. There is no escape. Fatigue and burnout are real. I’ve lost count of the frustrated hot tears I’ve had to wipe from Alice’s face if her levels are high for a couple of days, or her HBA1C ticks up, and the tears of anguish that my wife and I share after Alice has gone to bed after such an outburst.

Alice went on a Diabetes UK camp that first summer of 2014, and was surrounded not only by other diabetic kids, but 99% of the the adults running the camp were diabetic as well. Diabetes was the norm. An experience like that enabled Alice to accept it and the confidence and network she developed through that experience continues to help her to this day.

To my mind, the Diabetes Week hashtag #talkaboutdiabetes is possibly the most fundamental, next to managing the condition. We need to talk about diabetes, not only because we are trying to deal with it day to day, but to create awareness.

Acknowledgement Diabetes UK