Share your story of diagnosis

[HelenParticipant]

Hi all we were thinking it might be nice for people to share their story of diagnosis. Feel free to post your story here.
look forward to hearing what it was like for people.

Here is mine
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I was diagnosed with type 1 diabetes when I was 12 years old which is now 33 years ago. At the time, I had been losing a lot of weight, which as a 12 year old I thought was great! I remember I bought a new bikini for our family trip driving from South Australia to Queensland for the holidays to show off in. We had a camper van and my sister and I were sleeping up the top. My parents were woken multiple times a night as I clambered down to go to the toilet. This continued across the journey as I was constantly asking for drinks and needing toilet stops. My parents, not knowing what was happening, would yell at me to stop drinking so much and I would not need the toilet so much! Little did they know. Towards the end of the trip, with me becoming more lethargic and developing an infection, my mum knew something was up. On our return she took me to the local doctor in the country town where we lived. He did a urine test and diagnosed type 1 diabetes on the spot. I can still remember the moment of shock. All I knew about diabetes was that you had to have needles, which I was terrified of and you had to test your urine, which disgusted me.
Things moved fast from here as we were booked to go to the Children’s Hospital in Adelaide the next day. I was really angry as it meant missing my best friend’s 13th birthday sleepover. We travelled down and I was placed into hospital and onto insulin injections immediately. I was in hospital for 2 weeks – endured a forced hypo (low blood glucose episode), learning injections into oranges and given the horrid list named “forbidden” foods – what was ok to eat and what to never let pass your lips again (thank goodness we have moved on from that.) For my parent’s there was the shock, guilt, fear and grief of not knowing what might lie ahead for their little girl. Once home my parents weighed and measured all my foods; a diabetes corner was placed in my room for testing blood and it took up a huge space! Initially I had to do Urine tests and shortly after Blood Glucose monitoring. As I headed into my teens, at first I did what was expected of me. However in time, I started to have periods of rebellion. I felt lost, isolated, and different. My parents were teachers at my area school and I always felt watched. I could never get away from them, or from my diabetes.
When diagnosed I was told about all the horrific diabetes complications – that I would not have babies; that I had a high risk of losing my legs, eyes and kidneys. You can imagine what being told this does to a person. As a young teen I did not tell people about my diabetes. This meant high risk, as I would not take insulin or check my blood glucose. I was out in situations with lots of alcohol, in the country, in isolated areas. I did not tell boyfriends or wear my medic alert. As a mum I know now how terrible this must have been for my parents. Around 14 years old I stopped looking after myself properly; dropped an insulin injection here and there and made up my results for the doctor on our 3 monthly trips to the city. I travelled through this difficult period of my journey with diabetes until I was about 19, when I started to realise I needed to make changes. I started to realise diabetes management was about ME. I fronted up to my diabetes doctor and told him I had been lying to them about my results and he said “ do you think we are stupid?” This made me realise it was all about me – not about showing “good” results to the doctor, or being a “good girl/diabetic”. As a young adult becoming more comfortable with who I was, I became more open and began to wear a medic alert. I would tell partners about my diabetes and it was never an issue in any of my relationships. However there were still times I was out partying without my long acting insulin and would end up at someone’s house and stay the night without my injection. I guess I really had my final turning point in accepting my diabetes when I fell pregnant with my first child who is now 18. I worked hard to gain control because it mattered more than it ever had. And now, I feel diabetes is mostly a comfy part of my life, with many moments of frustration and wishing it away still. That is normal and it would be odd to say that you simply loved having diabetes. I love my life, I deal with my diabetes.
bye for now
Helen

[Author]

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