The Challenges of Parenting a Young Adult With Diabetes

Today is my Mum’s birthday, and I couldn’t think of anything more fitting than to re-share these words she wrote about the challenges of being the diabetes parent of a young adult last year. And also because I got a bit carried away making birthday cake last night! Happy Birthday, Mum!

We are so proud of you Frank, that you manage your diabetes yourself. I must admit, in the beginning when we were learning about type 1, I didn’t know how you would cope. I myself found all of the information given to us mind blowing. There was just so much to take in.

So, fast forward five years and you ask the question, how much do your parents think about diabetes. Obviously, over time, the focus has changed. You have proved that you can manage your diabetes yourself, so that element is a relief for us. But we never stop worrying. Just knowing that you could black out if you went too low is always at the back of my mind. I am so relieved that I have never had to use that glucagon kit that we have in case of emergency.

We worry when you are out by yourself, especially since you don’t like wearing your bracelet. You wouldn’t believe our sighs of relief when you returned from the apartment after doing the BridgeClimb that night in Sydney. We know that you don’t want to burden us with your diabetes, so we try to act calm even when we are worried silly. When we hear noises coming from your room in the middle of the night, we would love to come in just to see that you are okay. We know that you wouldn’t like that, but hope that you will let us know if you ever need help.

We notice everything. When you don’t have breakfast in the morning, when you don’t eat all of your lunch at work and the times where you don’t eat much at all. We notice when you are grumpy and don’t want to talk, when you eat heaps of sweets and junk food, and when you look tired or unwell. Living in the same house, we know when you are checking your levels. We see you giving your insulin. We even notice the boxes in the fridge! I even feel guilty that we can just have a piece of chocolate in front of the TV without giving it a second thought, whereas you have to decide whether you are going to have it or not.

I talk to my friends about diabetes. I try to explain it to them. Most people, like we used to, know nothing about type 1 diabetes. Living with someone who has type 1 diabetes has made us more aware of the foods we eat and our lifestyle. Especially sugar and fat rich foods and recipes. Whenever someone in the family is sick, I make sure there are no diabetes symptoms. Any one of us could get diabetes. I’m very conscious of type 2 diabetes as well. So many people have it and it can be avoided!

Reading your blog has been great and I can see a difference in you. Connecting with people going through what you go through every day has made you more open and confident. It’s good to see you taking an interest in diabetes and not shying away from it.

Diabetes has become part of our lives. We don’t realise it, but “it’s there.” We have become diabetes aware. Whenever anything is reported in the media relating to diabetes, we take notice. Who can think of Sir Charles Gardiner Hospital without thinking of the wonderful Diabetes Clinic there. We know when it’s National Diabetes Week. There’s the NDSS. The Run For A Reason supports diabetes. We take notice of celebrities and sportsmen who have diabetes. We read your Diabetes WA newsletters that are sent to our e-mail. We hear of all the research that is being done into diabetes and we always hope that a cure might be possible in the future.

We are always thankful and happy that you will be able to live a normal life, and that we live in a country where we have access to doctors, hospitals and good health care. Even though we don’t have diabetes ourselves, we like to think you consider us supportive. You may not think we understand, but if you don’t include us with what is happening then it is more difficult for us. We are here sharing the journey with you in our own way whether you like it or not, whether you include us or not. Don’t ever forget that.

Diabetes Instinct

“Frank, when you first got diabetes, what were the symptoms?” Mum asked me on the weekend. 

Of course, Mum knows the symptoms of diabetes well enough. But I knew exactly why she was asking. I was actually thinking the exact same thing myself.

“The weight loss was the very first thing, but that was a few weeks before I was diagnosed. I didn’t even notice that until the very end. Then I started to feel a lack of energy, and the thirst, a few days before. Eventually I couldn’t even get out of bed.”

“Were you eating?” (if you want to get Mum worried, just tell her you don’t feel like eating!)

“Yeah I was, up until a couple of days before.”

My sister hasn’t been feeling well. It seems like a bit of a virus that’s been lingering around over this past week or two. 

Of course, I know the symptoms of diabetes all too well. I still remember my own, as though they happened only yesterday. I was certain that this was nothing to worry about. But I could still feel the knots in my stomach, turning. I was anxious, and I could feel myself begin to tremble as we were talking it through. 

That instinct was still there. That instinct of diabetes symptoms will always be there.

I hate this disease. I hate how time consuming it is, I hate how much I have to think about it, and I hate how I feel because of it. There’s only one thing I can think of that would be worse than having diabetes itself. That would be having to see any of the people that I love live with it.

In this very moment, as I am writing this, I realise exactly how all the courageous diabetes parents and families in the world feel.

I realise exactly how my own loved ones feel. When they hear the prick of a lancing device. When they hear the clicks of my insulin pen. When they see me shoving sugar down my throat. When they hear noise coming from my room at 2am in the morning. 

I’m not ashamed of my diabetes.

Diabetes hasn’t held me back from doing anything.

I don’t spend my time worrying about diabetes.

But knowing that my loved ones have to see me live with this disease day in and day out, is far worse than having diabetes itself.

A Good Listener

In my day job, people talk to me. People talk to me a lot.

I guess you could call me the middle man between the people in my workplace and our Union. People often come to me with their issues, questions or concerns. It could be anything from working hours, to classification of duties and pay, or to general conduct in the workplace. I can provide some guidance, go and find additional information, or connect them to someone within the Union.

It’s not exactly a paid job. There are a few perks. Like free lunches. Coffees. Conferences held in fancy venues. Goodie bags, and the occasional freebies. However for the most part, I’m simply an employee taking an active interest in the welfare of my workplace.

All the time, I am asked what exactly it is that I do in this role. And most of the time, my answer is simple.

I’m a good listener.

It’s about being able to listen to someone in the staff room who needs to get something off their chest. It’s about going up to someone and asking them if they are all right. It’s about being knowledgeable and helpful for the inquisitive people (myself included) who like to ask a lot of questions.

Sometimes the concerns are genuine ones, and I will be able to help them out. Other times, I can simply offer them my time. I can offer them my undivided attention. I can try to be as helpful as possible. I can keep these matters in the strictest of confidence. I can also respect that every concern being raised is important to the person asking.

Some healthcare professionals could certainly take a leaf out of my book.

Sometimes I’ve been made to feel like a worry-wort when bringing up issues that might seem insignificant. Sometimes I feel like an absolute idiot when a big concern that I’ve worked up in my head is absolutely nothing. Sometimes those feelings of relief are overshadowed by feelings of guilt for wasting a busy professional’s time. Other times I simply don’t feel that anything helpful has come from a consultation.

However, I don’t know any better. I am simply the patient, with the best of intentions towards my health at heart. It often takes a great deal of courage to raise an issue with one of my healthcare professionals. As a person with diabetes, this could mean accepting that I am ill. This could mean sharing sensitive information about my diabetes management. This could mean confirming a devastating diabetes complication. This could mean setting off a wave of guilty feelings and what-ifs.

I need undivided attention from my healthcare professionals. I need to be treated like the most important person in the room. I need to be shown empathy when I am talking. I need support and helpfulness during consultations. I need to be commended for coming in, and for taking my health as seriously as I possibly can.

I need motivation from my healthcare professionals to keep taking my health seriously, because my diabetes isn’t likely to go away anytime soon.

Being a good listener is a good start.

Diabetes Online Community Down Under

I have very little Australian spirit. You need only watch me shouting at the overhyped Aussies in the Australian Open. Don’t even get me started on Nick Kyrgios…

However, in the spirit of Australia Day tomorrow, I would like to acknowledge some awesome people in our Australian Diabetes Online Community. Also because I’m going from memory here, I apologise in advance if I’ve gotten any of my facts wrong!

Melinda, one half of Twice Diabetes, always brings a great deal of knowledge, experience and helpful advice to conversations in the DOC. She’s also not afraid to call it like it is where diabetes organisations are concerned.

When I first connected with Maureen at Mum of Type 1, she was concerned about a future for her teenage son with type 1 diabetes. She’s since joined the ranks of the Twitterverse, written to politicians, fundraised, and continues to blog as her secret therapy!

Renza at Diabetogenic is very honest and relatable, and she’s not afraid to tell us that diabetes is plain crap to live with. Working for a diabetes organisation in Australia, her writing also gives us the insider’s view on her advocacy work.

I feel like I have a lot in common with Georgie at Lazy Pancreas. We were both diagnosed with type 1 in 2010 at roughly the same age. A diagnosis with type 1 presents unique challenges at every age, and Georgie articulates in her writing what I often feel myself.

As the title of her blog suggests, Rachel at Yoga For Diabetes lives and breathes yoga. When Rachel was diagnosed as a LADA a few years ago, she wanted to show others how yoga could benefit people with diabetes. She now has dedicated social media channels, and a book in the works.

Kyle at Training T1D displays admirable determination in not letting diabetes get in the way of his cycling. He impressively navigated his blood sugar levels through the JDRF Ride to Cure Diabetes in South Australia this month, and raised over $4,000 in doing so.

Ashley at Bittersweet Diagnosis was initially diagnosed as a LADA before becoming insulin dependent. Ashley is a dietician, and recently travelled to Vancouver where she was elected as President of the International Diabetes Federation’s Young Leaders in Diabetes program.

I’ve always wondered what life would be like if I was diagnosed a few years earlier while I was still at school, and everyone ‘knew.’ Bec at A Diabetic’s Rollercoaster handles it with a lot of enthusiasm and humour, and I enjoy reading about how she navigates diabetes among her friends as a young adult today.

Then, of course, there’s the awesome Oz Diabetes Online Community who hangs out on Twitter every Tuesday night. I appreciate this group so much. I can’t say how awesome it is just to casually chat, bounce ideas and thoughts about, and laugh with a group of people who just get it.

Our online community here in Australia may be relatively small (to my knowledge, at least), but know that I really appreciate each and every one of your voices.

Happy Australia Day!