My Diabetes Inklings

Think Before You Ask

What are the chances my child will develop diabetes? That’s been a question that has come up a few times since I fell pregnant and have seen been asked about in the community. Of course it’s also a question I’ve mulled over many times. Recently, while I was being interviewed by a friend about living with diabetes as part of her Masters thesis, we discussed this at length. We ended up having a pretty deep chat about it especially as she lives with diabetes herself.

Statistically speaking, the answer to that question is readily available on the web. You can read about them here. But I think often people who ask don’t just want to know the science. Some might want to know if we have considered this chance of passing on diabetes to our children and the ethics of doing so. I have seen comments online and heard of people who say people with diabetes are selfish for having children, knowing that they could pass the condition on; like diabetes is the worst thing in the world they could have (I would argue being rude would be far worse but anyway…).

How would I tackle the question? It would probably depend on who was asking it and the tone they had approached this. I am all for having an honest discussion about this topic. However, if the question was asked in a way to set me up for a big guilt trip, then I would have no interest in entertaining them.

Having children is such a personal and huge decision and responsibility. It’s one I don’t take lightly and have debated with myself internally for years. I remember someone once said to me I was still too selfish to have a child. I wanted to travel, and splurge money on delicious foods and tech gadgets. Now I realise that it can also be considered quite selfish to have a child. AND I don’t necessarily have to give up all the things I want to pursue and indulge in.

What if my child does develop diabetes? The more I think about it, the more I realise that it doesn’t really matter. Yes my heart will ache for them. But if diabetes is the worst thing to happen to my kid in their life, then they’re doing pretty well. Being diagnosed with medical conditions, whether they are chronic or short term, is a part of life. You can never guarantee someone a perfect life without any adversities. How boring would that be?

I know that whatever happens, we will support our kid however way we can. If my child does develop diabetes, I’d almost be relieved, as I know what we will be dealing with and our kid will be surrounded by some amazing role models to learn from. If anything living with diabetes has taught me so many valuable life lessons that perhaps they will come to learn and apply to other situations too.

Overall, I think it’s important that people understand that being diagnosed with diabetes does not diminish a person’s worth or a parent’s love for them. So next time you want to ask a person what the risk of them passing on <insert health condition> to their child is, I would implore you to give serious thoughts before you do. Think about what you’re actually trying to ask and how it may impact them.

For her, seeing an insulin pump is normal…
My Diabetes Inklings

The Privilege of Informed Consent

Here we are again, back in lockdown with mixed emotions. From others, there seems to be a pronounced sense of frustration and anger. People are getting increasingly cranky about mixed messages and lack of clarity around guidelines and being forced to close their business at the drop of a hat (understandably). Passing conversations with people around our community has taught me that majority are worried about getting the COVID vaccination. They have questions but are too afraid to ask them for fear of being shut down and labelled as an anti-vaxxer or feel forced and pressured by their doctors to get the vaccine.

I am well aware of how they are feeling as I’m in the same boat. Numerous conversations with my diabetes team and friends in the health industry have all led to my decision to wait as long as possible before getting the COVID vaccination. This doesn’t mean that I am an anti-vaxxer, which I have already been accused of. I am very well aware of the benefits of vaccination and am grateful for them. Especially as I rely on herd immunity for a few things like chicken pox as it turns out that I am one of the small percentage of people where its vaccine is effectively useless.

I’m grateful that my diabetes team have been willing to have an open discussion with me on the risk and benefits of getting vaccinated against COVID. They listened to my concerns and situation, provided me with what information they know and supported my decision. I only had one GP who insisted I get vaccinated simply because it was “the right thing to do” without considering my medical situation.

In research, we teach our students the importance of obtaining informed consent from participants before they take part in a study as part of ethical practice. I am lucky that we get to exercise that here in Australia, where you even need to sign a consent form to feed your baby formula in hospital because your breastmilk is taking its time to arrive. Before people are able to make an informed decision though, unbiased, evidenced based information and opportunities to ask questions should be provided.

At the moment access to safe spaces to have such discussions is limited to your healthcare teams. Information is only coming through social media, often through media companies where bias is rife. Social media is also a cesspool for peer pressure; with people blame and shame are inflicted upon those who dare speak out against the norm. It makes me feel guilty for having a medical reason to postpone getting vaccinated against COVID.

It’s not a surprise that I am feeling so exhausted and burnt out from social media. There’s little room to hide from such negative sentiments when it’s all everyone is talking about. I’m trying to focus on things I can control and minimising my time on social media or refocusing my content stream to things that are helpful or positive. But it’s tough and can be isolating. So if you’re in a similar situation, I hear you. You are not alone. And if you’ve got your COVID shot – awesome, now please be kind.

Dear Healthcare Professionals, My Diabetes Inklings

Reducing the Mental Burden with Apps

When I was first diagnosed with diabetes, the importance of tracking my blood sugars was drilled into me. I started out tracking my sugars in a paper diary, which I soon digitised by creating a Google Sheet I could update in real time via my phone.

A few examples of my online logs – things have definitely changed over time; from the early days of multiple daily injections and being obsessed over tracking my weight to carb counting and fine tuning my food intake, exercise and blood sugars

After this, I discovered the world of diabetes apps to help with tracking blood sugars easily. I went through several different apps before I found that I absolutely love and still use today. With my app, I can see my data that has been represented visually in a way that summarises all the key relevant information in relation to my diabetes management. I can choose to look for patterns if there are things that need addressing urgently or store it away to review with my diabetes team.

Funnily enough, the same approach has been hugely helpful when it comes to looking after a baby. When her last feed was, which boob she fed from, when her last nappy change or nap was…there are so many things to keep track of and it’s nice to identify any patterns as fleeting as they may be. Having all of this info easily available on an app has been amazing to help reduce that mental load, especially amidst the sleep deprivation fog.

However, sometimes when I pull up my baby tracking app during our maternal child health nurse appointments, I felt judged for having to look up details on the app because I can’t tell you off the top of my head how many naps or feeds she has a day. It’s made me come away from appointments feeling like a failure of a mother for having to rely on an app to help me look after my baby. But then I think back to how and why I use these apps in the first place.

Apps don’t need to be fancy either. Something with a nice user interface, easy to navigate and most importantly does the job you want it to is all you need.

The biggest benefit of tracking data for me is the reduced mental burden of having to carry all that information in my head all the time. I just log things as they occur like a hypo or pump site change or a diaper change or feeding session. This leaves my brain to focus on the million other things I’m working on. I can then easily troubleshoot when bub is crying whether it’s time for a feed or diaper change or nap because I am rubbish at differentiating between her cries.

Of course there is a fine line when it comes to tracking data. There have been moments (especially looking back at things now with diabetes) where I developed an unhealthy obsession with the numbers and lost sight of the big picture. It’s taken me a while and regular reminders now that the information I’m tracking are data points to inform my next steps. The reduced mental load helps me to live my life and enjoy the moments and the information collected is not a reflection of myself or a sign of success or failure.

Most importantly, tracking this data is my decision and choice and I certainly won’t care for judgement from a healthcare professional. Everyone will have different ways to managing their data. I hope that healthcare professionals can acknowledge this and be open to learning from their patients around what works for them. You’ll never know when it may help others along the way.