We need to talk about Diabetes

It has been over two years since Rudi has been diagnosed with Type 1 Diabetes and I still struggle “talking’ about it. Sure, I answer questions as they come up and mention it in sentences enough to say I do talk about it, but actually, I don’t want to. I just don’t. And it is not because I don’t want to talk about Diabetes…

I guess I am tired of answering questions, getting eyeballs and raised brows, over-sympathetic people (don’t get me wrong here, you do get the most sincere sympathetic people), uninformed comments and hurtful things people sometimes say without thinking. It can feel so lonely when everyone else seems so normal, but our story never is just normal.

People are curious. We all are. In fact, Hubby hangs his head in shame for the questions I sometimes ask people, so it is completely normal. I respect that. To a certain extent, I have to add.

People are naturally curious, they want to see what’s going on.

Jeff Barker

A month or two into the Diabetes Roller Coaster ride, I – somewhat sceptical – joined a support group called the Young Guns. It is a group for parents and young adults living with Diabetes in and around Port Elizabeth. The support has been amazing and, realising you’re not alone, has changed the entire game for us.

But still, I was struggling to deal with conversations involving my child and our parenthood. Last week I asked the group what questions or comments regarding Diabetes they dislike most. As the answers came through, I felt less alone again, because many of these have the same theme. Funny enough, many of these comments and questions were also asked by myself when Rudi just got diagnosed. I even asked the doctor what type of Diabetes Rudi has >facepalm<, so yes, I truly understand where it comes from: it comes from being uninformed.

So, let’s talk about Diabetes, shall we?

Diabetes is a lifestyle, not a death sentence. Rudi is a perfectly normal toddler, the only difference is that he is on a very – very – controlled diet and gets injections four or more times a day. That’s it. Nothing else. A few people have the tendency to hand your child a shortened lifespan and expect you to be fine with it. You also get people who think it is you that is giving your child’s life a limit. They would say something in the lines of “I know so-and-so with Diabetes and they’re already so-and-so old.” I know that. Rudi is not the only kid with Diabetes. There are, have been and will be many more like him. They get diagnosed, struggle, grow up, struggle some more, grow up some more, and then they carry on like any other person. Yes, there are complications and things that we need to be aware of and take good care of, but Rudi’s chance of survival is the same as any other kid’s.

No, he is not going to outgrow it. As much as I would love my child to outgrow Diabetes, it is not going to happen. We are playing the cards we have been dealt with and we just make shit up as we go along. When Rudi is a grown-up we will have to – reluctantly – hand over the responsibilities and pray that he makes the right decisions.

Yes, he is on insulin and will be for the rest of his life. Unless – we are holding thumbs – there’s a major breakthrough or something scientists can develop to change this.

How often do you have to measure his glucose? A lot. Most medical aids cater for a maximum of eight measurements a day when using a “pricker” like the AccuCheck. Unfortunately, we can’t rely on only eight measurements per day. Not one day is the same. We use the Freestyle Libre sensor on Rudi and have been very happy with it. It allows us to scan as many times as we want and we can keep track of what happens when he eats certain foods or plays harder some days. At school, Rudi has set scanning times, which alone is four times a day. And he is only at school in the morning!

So, if you measure him so often, what do you do at night? Hmm, we get up. Hubby and I do this in shifts, so it is not like one of us is suffering alone. We are in this together. This is probably the second-worst question I have to answer because I don’t want to “seek sympathy” or share my good or bad nights with anyone. It is personal.

How did you find out Rudi was Diabetic? To me, this is the most dreaded question of them all. A mother knows. She just knows. I am not sure why I don’t like being asked this so much, to be honest. I suppose it is either because I have to answer it so often, or maybe because it brings back bad memories or maybe because I just don’t feel like talking about Diabetes. Maybe all of the above. (I promise I will do an elaborated blog post on this question in the near future!) In short, Rudi had what seemed to be a tummy bug that would not go away. He lost a tremendous amount of weight. And then, one week, he just got extremely constipated, drank litres of fluids and became very weak. We took him to the hospital and within minutes our paediatrician knew what was going on.

Rudi was a bottle-baby. I don’t know how this question is relevant, but I get it quite often.

I think I understand what it is about Diabetes I don’t like talking about. It is a very sensitive topic when it becomes part of your world and it often so happens that you take things personally. (Some days are worse than others.) People are naturally curious, that’s how we operate. A doctor or a librarian or a lecturer or graphic designer >giggle< has to explain and do the same things over and over and over again because it is their job. As a T1D Mom, it is my job to answer questions and explain things a bit. I am, however, nervous about the conversation I am walking into. It can go both ways. A couple of moms might agree with me when say: It is not what you asked me, it is how you asked me. So, in a nutshell, I am petrified of people’s reaction when we talk about my kid. I don’t want to be judged, be felt sorry for, or be anything other than accepted as normal. To us, life is normal and that is all there is to it.

Some people are kind and other people are cruel. How you perceive them is up to you, I guess.

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