Bad Mother!

Our whole world crumbled with the prick of a finger; my 11-year-old son was diagnosed with type 1 diabetes. I can recall every second of that day (not without crying). My mind raced. How was he going to cope with the injections? How can I answer his question “why me?” He needed love and reassurance. We didn’t sleep that night with torturous emotions and 2 hourly blood tests. The effect of this unfair diagnosis in an already troubled child and the overwhelming maternal guilt have never left my mind nor have I slept since, testing his blood at 2am and 5am nightly due to 1.9 scares (he now has a CGM). My son couldn’t and wouldn’t accept things — but what could I do? Putting myself in his shoes revealed inner thoughts and questions I thought he might have because he wouldn’t talk. Weeks passed, I read so much hoping to be able to answer his unasked questions. I wasn’t enough, so I arranged for him to see a psychologist specialising in childhood diabetes; it did not go well. It is only now (this week), 4 years after diagnosis he has requested to see a psychologist. In Reflection, I was too full on, he needed time when I thought he needed information — he is not me.

Ignorance is bliss, I say ignorance is hurtful. Parents grabbing their children’s arm to move them away as if it’s contagious or he’s going to inject them. Adults commenting, “It’s disgusting letting your child get diabetes — shouldn’t be allowed to have children.” “No wonder he’s diabetic, she’s pushing sweets in his mouth.” I want to shout, I did not let my child get Type 1 diabetes, it’s an autoimmune disease. Sweets don’t cause T1D, I gave him Glucotabs to bring him round from a hypoglycaemic episode, he was slumped on the floor because he lost the use of his legs, without sugar he would have fallen into a coma.

I cannot blame people for their biased opinions as they are based purely on a lack of knowledge. I have educated my sons friends, teachers, and my friends but it’s not enough. The thought of increasing awareness, differentiating between type 1 and type 2, and answering why me? were big drivers for me embarking on a Master’s in Public Health. Can I help communities by creating symptom awareness, convincing local CCG’s to hand out symptom cards as they did for meningitis? and hopefully get it included in school PHSE lessons.

It would be amazing to be involved in legislation so all restaurants provide carbohydrate content, few do and as the picture shows an educated guess can lead to the wrong dosage with dire consequences.

On a personal note, the bias that I have encountered unwittingly fed my preconceived bias. I was so fed up with all diabetics, irrespective of type, being grouped together and viewed as ‘self-inflicted, lazy, greedy people.’ I began to resent type 2 diabetes for incorrectly stereotyping my child; I began to believe those very T2D stereotypes. This made me as ignorant as the people I had encountered. We know that T2D can be caused by poor diet and lifestyle, but what if there was also some other underlying factor, as yet undiscovered. Surely, we owe it to ourselves to question our bias and be open to accept the possibility of the unknown, otherwise how else does science progress?

Written through the eyes of a mother in the UK with a pharmaceutical background, wanting change.

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