|Hey guys, welcome to my life with a chronic illness. My name’s Stéphanie, I’m 42 years old, and I’m a nurse. I’ve been living with Type 1 diabetes since I was 27, and I have a child who was also diagnosed with T1D in 2017.|
I’ve been living with since the age of 15 and, at the time, I was obsessed with being able to do my dream job – being a nurse – while living with chronic illness.
Once I’d overcome this challenge, I wanted to be a mum.
With diabetes, nothing’s really ever been simple but, so very much wanting to have children, we kept going.
I consulted by diabetes specialist before coming off my contraception. I was asked to keep my diabetes as under-control and balanced as possible, and my baby was given additional monitoring throughout my pregnancy.
At no point during my pregnancy did anyone mention the possibility of passing my T1D onto my child.
The Diagnosis, The Day When Our Lives Changed
My daughter was diagnosed with diabetes at the age of 10, on 12th August 2017, to be exact.
I’ll never forget that day because, at that very moment, my world crumbled. I was overwhelmed by a feeling of guilt, I was stunned, in shock and outraged against everything and everyone. I feel horribly guilty that I’ve passed on this chronic illness, that’s insidious and difficult to manage in everyday life, onto my child.
So many questions where whizzing around in my head. How could I have passed on my Type 1 Diabetes to my daughter? Is it hereditary? If there was a risk, why didn’t anyone tell me? How will my little girl deal with living with this T1D, which I thought I was alone in having to overcome?
The Road To Accepting The Illness
I’d say that accepting chronic illness is an experience almost similar to grieving. There are several stages to go through, various phases, especially in terms of emotions.
After anger and despair, support, guidance and mutual assistance settled in.
In their hospital room, Lucie learned that they were going to be living with a Type 1 Diabetes, like their mum.
My diabetes has never been an off-limit subject at home, but that said, I didn’t necessarily expose Lucie to it. I taught them to recognise the signs of hypoglycaemia, particularly so that they could help me take rescue carbs if I had a severe hypo. So, they knew what it was.
Despite the pain and all of the emotions that were overwhelming me, my role as mum meant I had to be there for them and help them overcome this challenge.
Who better than me, their mum who also has Type 1 Diabetes, to know that not every day would be easy? Because it’s true, the challenges of daily life with a chronic illness never go away!
Yet, rather than basking in self-pity over the medical hand we’d been dealt, I was determined to show them that you can lead an almost normal life when you’re living with diabetes.
My daughter has always seen me doing what I wanted, without restrictions, so I hoped that, at 10 years old, they’d remember that and be reassured, that it would give them hope.
My role was to preserve this optimism because, at that very moment, the journey was only just beginning!
Diabetes, A Special Connection That Brought Us Even Closer Together
We were on holiday when we found ourselves in a hospital that I’d never heard of, 700 kilometres from home. A new diabetic in the family, nothing familiar around us… It started to all get a bit much. I grabbed my daughter’s therapeutic education and treatment by the horns.
To start with, I did their capillary glycaemia, and, for their first injections, I let them give me subcutaneous injections. They did my boluses with pens, whereas I initially was on an insulin pump. I wanted them to learn how to do it and to practice it, so that they could do it for themselves.
These rather unique moments that we shared, and that only we knew the reality of, created a very special relationship between us, that led to much more intimacy and made us a lot closer, the cornerstone of this being sharing experiences, helping each other, and comfort.
Mum Or Nurse – Where To Draw The Line?
Over time, my place as mum changed, and I tended to lean further into my role as specialist nurse. For me, it was a way of keeping control over any risks. Yet, in the end, and without even realising it, our conversations were only ever about their diabetes: hypo, hyper, insulin… I sometimes even forgot about my own diabetes.
Two years after Lucie’s diagnosis, during a consultation with their diabetes specialist in our original hospital, the specialist gave me the heads up, and recommended that I stick to my role as mum and to let someone else, from outside the family, pick up the relay on the role as nurse.
In hindsight, they were absolutely right. Being both a mum and a diabetic, it enabled me to share my experience with them, and to be more understanding were things got a little tough. When their diabetes becomes a restriction, and they struggle to control it, I understand them better than anyone and can support them through it.
Yet, at the same time, I like to be in control of everything, I’m anxious, I’m afraid that everything won’t always go well… Without necessarily being aware of it, that can result in me representing a source of pressure, wanting to control their choices, being extremely present, occasionally bordering on intrusive.
I also have some work to do on myself, and I’ve been brought to realise that my role as a mum also means leaving Lucie some independence with their diabetes (whilst keeping an eye of things, just from more of a distance).
Are Laughter And Having Fun A Form Of Therapy?
To make it easier to live with, we’ve decided to look at diabetes with a positive outlook.
We set ourselves challenges that make us smile, like the challenge of seeing who has the best weekly average blood glucose, the unicorn target (blood sugar at 1 g) or even timing ourselves while we both change our pumps (no, we’re not kidding, we both have insulin pumps now).
These moments let us scale down the dramatics of life with diabetes and encourage us to share our experience, these are OUR moments!
The best fun is saved for the risk-taking when we let ourselves loose with a few indulgent treats: ice cream, waffles, pancakes… Which of us will keep the best blood sugar levels?
I’ll admit, it’s also a way of keeping an eye on what they do, so they don’t feel alone in their battle, and helps with making them more independent (okay, you got me, it reassures me, too).
Now, my daughter Lucie is 15 years old (5 years of T1D). We’ve gone through some difficult or even critical phases, namely with a few phases of illness denial, which is typical in teenagers. Yet, I never gave up, I’ve always supported, understood and kept an eye on them.
That feeling of guilt, that I’d passed my diabetes on to them, will never really go away, but I’m proud of how they handle it all, and of the independence they’ve developed and the maturity in their decision-making.