10 things I wish people wouldn’t say!

Since Fin has been diagnosed, there have been so many occasions where people have said things that have either upset me or made me want to scream!

Whilst I know that a lot of these comments are said out of a misguided sense of support or because people simply don’t know what else to say, I thought it would be helpful to put together a list of “helpful hints” of what NOT to say to the mother of a kid with Type 1!

I don’t know how you do it, I could never stick needles in my child. 

Funnily enough, “keeping your child alive” is a pretty big incentive. I am sure this comment is meant as some kind of compliment but it actually insults me. It makes me feel like I stick needles into my child out of choice and that I must be some cold unfeeling mother to be able to do so. I stick needles into my child because I have no choice. If I don’t, he won’t survive. I cannot tell you how much it still kills me every single time after almost 7 years.

Will he grow out of it?

He will never “grow out of it” and the only way he will ever know a life without Type 1 is if a cure is found. I hope and pray with every fibre of my being that this day comes within his lifetime but the truth is, deep down I don’t believe it will.

How can he eat that, it has sugar in it?

I saw this caption the other day and it made me laugh!

People assume that because Fin has diabetes, he cannot eat anything with sugar in. It’s actually carbohydrates as a whole that make Fin’s blood sugar rise and as long as we know the value of the carbohydrates in the food so that we cover it with insulin, he can eat anything! (As long as it’s gluten free but that’s another story!…….)

He has Diabetes AND Coeliac Disease, the poor little thing!

Don’t get me wrong, there is no malice whatsoever in this statement and reflects exactly how I feel about my little boy dealing with all that he does on a daily basis. But please don’t say this in front of him. I bring him up to embrace life and live it to the full. I tell him that his health conditions will never define him and will never stop him from doing anything. I reassure him that he is the same as all the other children in his class and that his pancreas just needs a little bit of help and I tell him that gluten free food is better for you anyway and that we don’t actually need gluten in our diet to be fit and strong. So, for him to hear people pitying him flies in the face of everything I bring him up to believe in.

Oh he’s diabetic is he? My gran had that.

I love this one. Don’t get me wrong, there are bound to be a few grandmothers out there who do actually have Type 1, but in the majority of cases, when this comment is made, it refers to Type 2 Diabetes.

The two are very different. Type 2 is normally controlled via diet and exercise and a daily dose of tablets. Type 2 is a resistance to insulin whereas Type 1 is a failure to produce any insulin. My grandfather had Type 2 diabetes and he lived a full and active life. He ate a healthy diet and tested his blood sugar once in a blue moon. As long as he took his Metformin tablet every morning, he was absolutely fine.

Type 1 is relentless. It is life threatening. It requires micro management with every meal, with every bout of exercise, during periods of stress or excitement. It can be extremely dangerous when coupled with illness and prolonged episodes of high blood sugars can lead to the sometimes fatal DKA and serious complications in later life. It is a rollercoaster of trying (and often failing) to control blood sugars, which leads me on to the next question…..

Is he well controlled?

Right now, his bloods are a perfect 6.8mmol. Give it an hour when the 3 hours of rugby training kicks in coupled by the slow release of the carbs from his lasagne, caused by the fat in the cheese from the topping and he could be in the high teens or low threes. Who knows? I am a control freak. I have read books upon books and devised spreadsheets upon spreadsheets to try and help me to figure out this frustrating disease. The truth is, you can be armed with all the knowledge in the world and some days, no matter what you do, it will all go wrong and you will have no idea why!

I know someone who was Type 2 but it turned into Type 1.

Nope! Some people are wrongly diagnosed as Type 2 when they are actually Type 1 but Type 2 does not turn into Type 1.

If someone with Type 2 is unable to gain sufficient control with metformin and / or other tablet forms, they will be escalated to insulin injections. This does not mean they become Type 1!

They are completely different diseases!

Look out when he’s a teenager, he is bound to rebel!

I was speaking to a doctor’s receptionist recently who, when she found out that Fin was Type 1, made the above statement. I politely stated that whilst nobody knew how Fin would handle his illness in his teenage years, I hoped that as had been diagnosed aged 2 and therefore didn’t really remember a life without Diabetes, that we may avoid the rebellious teenage years, especially as he was so into his rugby. She basically told me that I had no chance and that he would 100% rebel against his condition and would fail to look after himself. She then proceeded to tell me horror stories of all the rebellious Type 1 teens she had come across in her time in the surgery. I now try to avoid this woman!

It could be worse!

Ah that old chestnut! It could be worse! Normally coupled with “it could be cancer” or “at least he was diagnosed young so he won’t know any different!”

And of course it could be worse. I have read stories of people who have three children, all of whom have Type 1. There are parents who have lost their children to Type 1 due to misdiagnosis. I read stories of parents who have lost their babies to stillbirth, who never got the chance to see them grow up. I see people who fight to the bitter end to save their children who have been struck down with the most cruellest of brain cancers and inevitably, no matter how hard they fight, have to kiss them Goodbye for the last time.

And my heart aches for those parents and I cry with them because I cannot ever imagine having the strength to get through what they do. And when I read their stories, I feel grateful.

I have my little boy here with me and he is a joy. He is the happiest kid I know despite going through so much behind closed doors that people do not see and I will be eternally grateful that we have the medication that we need to keep him alive.

But if you are standing there with your perfectly healthy children, never knowing or experiencing the worry and stress that I feel on a daily basis, please don’t tell me “It could be worse!”

Because, I can guarantee you that if we swapped places for the day, you would soon change your mind!

And lastly, my all time favourite….

“I know how you feel, my dog is diabetic!”

Yeah, that one was lucky to make it out of the conversation alive!

Beth

xx