Type 1 Diabetes through my sister’s eyes
It’s been 20 years this year since I was diagnosed with type 1 diabetes. I recently celebrated my diaversary with my parents, sister and grandmother. On the day I was diagnosed, all of our lives changed. My parents had to take care of a 5-year-old with type 1 diabetes, my sister grew up with her sister having type 1 diabetes and even my grandparents had to learn how to inject and do fingerpricks so they could babysit my sister and I.
And yes, I celebrated my diagnosis day. Being told you have type 1 diabetes isn’t worth a celebration. However, I am really grateful to be alive and healthy after 20 years. That is worth a party to me! I cooked lasagna for my family, we drank a glass of wine, lit a candle for my late grandfather and celebrated life with each other. I can’t express how much I appreciate spending time with the people I love through the good and the bad times.
After dinner my parents and grandmother went home. Emma, my sister, poured herself another glass of wine and we talked about our childhood, how we end up living close to each other again and we had a chat about my type 1 diabetes.
I asked my sister what her first memories of my diagnosis are. I was five at the time, she was about to turn 2, so it makes sense her first memories are from when I had already been living with diabetes for quite some time. I thought that she would say: Injections, finger-pricks, the tears because I was so afraid of needles, the hypos and the hypers… But after thinking for a while, she said: “It was always
just so normal, I guess. I can’t think of one specific memory. It was part of our day to day lives in the family. Our parents had to pay a lot of attention to you of course, but I never felt like they didn’t have enough time for me.”
I wondered when the realization came that it isn’t so normal to have a sister with a chronic condition. Emma recalls, “When you were in high school and you were dealing with diabetes burn-out...” We both kept quiet for a few seconds. “That’s what I remember as a really challenging time. For you, and for me.”
When I was in high school, I was often very upset and sad. I was admitted to the hospital a few times because of diabetic ketoacidosis and got a lot of professional help for my mental health.
“I felt so powerless” Emma says, “I was only about 10 years old, but I started to realise that you were really not doing well at all. But it also taught me to keep going. You would always end up being ok. You never gave up. That’s what I learned from you: no matter how tough it gets, with the right support, you would always end up being ok.”
While Emma keeps talking, I feel myself getting a bit emotional. She’s right. I do believe being positive and trusting it will be ok, gives so much power. I trust that it will always be ok, one way or the other. Emma telling me she learned that from me, means the world!
When I was eighteen I moved out of my parents’ home. This meant there was no type 1 diabetes in their house anymore. To me that is quite a strange thing to think about. My sister grew up around type 1 diabetes and suddenly it wasn’t there anymore.
It has been more than 7 years since I lived with my parents and sister.
“Of course your type 1 diabetes is still there, but for me it’s more in the background now” says Emma.
“I hear the beeps and the alarms when I’m with you. I see the dark circles under your eyes after you had a bad night. And I try to be there for you when you need to share your feelings and thoughts. I don’t mind doing that, at all. The hardest thing for me is knowing that diabetes sometimes holds you back and I wish you didn’t have to deal with that.”
We look at each other, smile and drink another sip of wine.
“There is one memory that I will absolutely never forget.” Emma recalls: “That is France.”
I think I was 14 years old and Emma was 10. Together with our parents we were on a holiday to the Alsace region in France. During one of the last nights I became very ill with diabetic ketoacidosis.
“You were in the back of the car with mum and a bucket. I sat next to dad who was driving us to the nearest hospital. It was such a long drive and you were so ill, you were barely conscious. Looking back, I don’t think I completely realised how serious it was, but by the reaction of our parents I knew something was really wrong.”
The local GP told my parents to drive me to the hospital themselves. I don’t remember much about that long drive. It must have been so scary for Emma. She tells me: “Once you were in the hospital you were in a room with three beds. You were in the middle one and the other two were empty. There were so many doctors standing next to your bed. I remember our dad crying and telling them that it doesn’t happen often.”
The doctors could only say a few words in English, and we didn’t speak French. It was quite a challenge explaining to them that I had ketones and type 1 diabetes. I was admitted to the hospital for a few nights. Emma slept in a hotel close by, together with either my mum or dad and recalls, “It was quite an experience, sleeping in a hotel like that. I remember I also bought you earrings to make you feel better! And you still have them.”
Type 1 diabetes is always there when we’re together, but Emma keeps saying it’s normal for her. Of course, we both know that life with type 1 diabetes isn’t normal. But after chatting about it for a while, I know what she means. In our family, we don’t let diabetes get in the way if it doesn’t have to. It’s not the number 1 thing we think about all the time, unless I have to. If it’s necessary, they give me all the time and space to put diabetes before everything else. That’s what she thinks is normal. That’s how they learned to be there for me. They don’t let my diabetes ruin our day. A hypo or hyper?
“We’ll just take a break and get on with the fun later!” says Emma.
And that is true. Diabetes can sometimes dictate the rhythm of the day. They go along with it and listen to what I need.
To me, this means the world.
We laugh, we cheers to life and get ready for a night out. There’s been enough talk about diabetes for today. It’s time to dance and party!