Diabetogenic

I missed writing for Sib of a D-Kid Day a couple of weeks ago.  Also, given that I was diagnosed as an adult, I don’t think that I really fit the profile of why the day was conceived. But having an adult sibling diagnosed with a life-long health condition and fitting that into the family dynamic does invite some discussion, I think. How does one sibling suddenly being told they have diabetes impact on other kids, albeit grown up kids, in a family?

I have one sister, Tonya. She’s a couple of years younger than me and is possibly the smartest person I’ve ever known. She’s gorgeous, sassy and caring. She also has a sense of humour on her that can have me in stiches for hours at a time. And, you don’t want to be on the receiving side of her wit – it’s scathing!

She thinks I am extraordinarily bossy (‘Try this on’, ‘Buy that’) and I think she is too. We are very different, but also very much the same about things. I pity any fool who gets on her wrong side.

Even though I am older, Tonya has a feeling of protectiveness about me that is especially prominent when she feels someone has done something to hurt me. And when it comes to me having diabetes.

Lucky for her, she has managed to avoid the dodgy autoimmune issues that plague our mum and me. This makes me feel incredibly glad and like I want to pinch her. Which I wouldn’t do, because I’m a little scared of her at times.

And I think that at times, she may be a little scared of the fact that I have diabetes. She’s never said that to me, but it’s just a general feeling I have.

One night we were having dinner at Marios – a favourite haunt – when I made some throw away comment about her living longer than me because diabetes would shorten my life by 15 years. That was very much the thinking at the time and my comment wasn’t meant to harm in any way. ‘Don’t say that’, she said with a slightly raised voice and her eyes started to fill with tears.

When I have been going through a difficult time of living with diabetes she is incredible. She rallies the troops, puts on her bossy boots and calls me to say things like ‘Right, so I’ve organised dad to sit with the kidlet if Aaron is at a gig so you and I can go for a walk three times a week. OK?’ or ‘I think you need to see your endo. Can you make an appointment tomorrow?’ This is followed up with daily phone calls, text messages, emails, sky-writing messages asking if I have, in fact, made that appointment. If this came from anyone else, I’d want to kill them. But from Tonya, whilst at times annoying, I know it is because this is her way of doing something for me and my diabetes. She may not be able to say ‘I know what you’re going through’, but her actions say ‘I’m here to help’.

She has had to deal with parents who now consider their daughters different to each other in some ways. She knows that they too fear how diabetes will play out in my life and she knows that there have been times that I have really needed them which has meant they probably weren’t there as much for her.

What she really thinks about having a sister, her only sibling, with diabetes is a mystery to me – we’ve never discussed it. But her support and encouragement and bossy ways tell me that she cares. I don’t think there is anything more that I could wish for.

Yesterday, Mia Freedman wrote a beautiful piece about grief and how people often don’t know how to deal with it. She also wrote about how we deal with grief as time passes and the tragic episode moves further and further into the past.

It got me thinking to diabetes. When I was diagnosed a lot of what I was told was pretty matter-of-fact. ‘You eat this, you check your sugars, you inject insulin’ and ‘If you don’t you’ll get this (insert graphic picture or graphic description of any complication)’. It was all very off-you-go-and-deal-with-it-now-you-have-the-facts.

There was no talk about how I might actually feel.

About three years after I was diagnosed, I developed some other short-term health problems that may or may not have had anything to do with diabetes. They did have quite a lot to do with physical pain and during this period, I learnt that I don’t handle constant pain very well. I spent 6 weeks in hospital as the source of the pain was identified and treated. Long story short – it was a really dark time for me.

My very clever endo, who had her hand in my care during this period, referred me to a psychiatrist. She said that she thought it would be a good idea for me to have someone to speak with. I remember the first time I saw him. I was still in hospital and in he walked. I was in bed doing one of the stupid exercises that was supposed to help me manage the pain, but really just annoyed me.

He sat down and we had a chat. He wanted to know about the pain and why I was feeling so low. We talked about how I’d managed to deal with a diagnosis of a life-long chronic health condition, yet was struggling to deal with something that was going to have an end-point even if at that moment I couldn’t think past the pain.

I started seeing him each week and it was after about a month that he said to me ‘you know, it’s okay to grieve about having been diagnosed with diabetes.’ I can remember that moment with such clarity. I looked at him and felt unable to breathe. I started to focus on my rapidly increasing heart rate and gulped air into my lungs. And burst into tears. As I caught my breath and my heart beat returned to normal I felt as if a huge weight had been lifted.

Grieving because we are diagnosed with diabetes should be acknowledged as part of the process of discovering our new life. It’s not being pitiful or pessimistic. Or thinking that life will only be depressing and not worth living. It’s not about being morose or tragic or hopeless. It’s about acknowledging that life will be different to how it was. There was a life before diabetes. I imagine for young kids with diabetes, it’s their parents who will remember this time and grieve what a diagnosis of diabetes means for their child.

I remember my life before diabetes. Less and less of that is clear and I can’t remember a time where I wasn’t haunted by the thoughts of what diabetes could possibly do to me as I grow older. My ‘what-I’m-scared-off’ is all tied up with diabetes.

No, we don’t get over it. We do, perhaps, get ‘used’ to it and stop thinking so much about life before. We do start to do new things to help us manage as best we can, and soon they stop being ‘different’ and ‘scary’ and just become routine. The well thought out changes we make to our lifestyle become second nature and we stop considering them as new.

Diabetes as a reality isn’t all terrible; it isn’t all bad news. Life with diabetes can be everything that you had ever imagined – just with the caveat of diabetes being there. Grieving about it is okay, especially at the time of diagnosis. I’ve learnt that there will be times that I grieve again – never as strongly as the time in the doctor’s office when I was given permission to let the grief come to the surface, but still, there are times when I do catch my breath and think ‘remember when….’

Living well with diabetes. That’s how I like people to think of me. And how I like to think of myself.

But there are occasions – rarely, although sometimes more frequent – where I do feel living with a life-long health condition that is there every minute of every day start to creep over me and a sense of dread and worry plant themselves at the back of my mind. For me, this is part of diabetes burnout. It’s a feeling of being overwhelmed by what diabetes is right now but even more, what diabetes could be in the future. How will my faulty pancreas and my autoimmune problems play out in my life?

And is there any point worrying? At the moment, things seem to be tracking along well. Annual complications screenings tell me that I am doing okay and I’ve read some research that shows people with diabetes are living longer and longer.

So why the dread and anxiety and is there any point? And even more, is it possible to change the way that we think about diabetes?

When I was first diagnosed, the smell of insulin would fill me with dismay. The very scent would remind me of the horrid, scary photos the doctor showed me within the hours of being told I have type 1 diabetes. An invisible force would reshape me from the vibrant 24-year-old I was at the time to a withdrawn, sick, shell of the person I really was. For months I felt this way and every time I gave myself a shot, it was like I was slowly drowning.

But that all changed one day. I drew up two units to squirt through the air before jabbing myself and said ‘Urgh. I hate the smell of insulin. It’s everywhere – I feel like it’s what I smell of now.’ Aaron who was sitting next to me looked up and said simply and matter-of-factly, ‘I don’t hate it. It’s the smell that keeps you alive.’  

And just like that, the smell of insulin went from being a death sentence to life saving. It never bothered me again. Keeping the perspective of diabetes in its rightful place is not easy and there will always be times that we feel like it is heading in the wrong direction. We just need to find ways – and people – to say things to help us get back on track.

‘Supposing a tree fell down, Pooh, when we were underneath it?’
‘Supposing it didn’t,’ said Pooh.
After careful thought Piglet was comforted by this.

                                                                      A.A. Milne