What is it about diabetes? What makes people reach out, seek others, make connections? Why is the diabetes online community so strong? I have been considering this lately.
Back when I decided to start a little website to support people with diabetes the use of the Internet in this way was unheard of. In fact the use of the Internet itself was not that high! Look at us now baby! So many wonderful people have come along to use the www to blog, write, tweet, chat, post, connect and support. I know this happens in lots of other health conditions and situations where people have a need to connect with others who understand. This is one of the beautiful things about technology. Yet in diabetes, it seems to be larger than life.
Thinking about my own life and my journey with diabetes explains this a little bit. I did not adjust to diabetes well. I did not accept it. I lived in denial for about 10 years or so. And I struggled. Alone. I am sure my parents, who lived in a small country town and had to travel to the city every 3 months to the children’s hospital and had no real support, also felt this struggle. And fear. The constant fear.
I was 12 when I found out I had type 1 diabetes. The shock sitting in the local GP rooms as he told us that I had type 1 diabetes and needed to go urgently to the city for treatment, stays with me and my mother to this day. My only experience of diabetes was meeting a cousin in England when I was 7 years old, who took me with her upstairs to the bathroom to take her injection. And my resultant fear of needles.
I did not have an easy “transition” into life with type 1 diabetes. I was in hospital when all of my friends started year 8 high school. Although it was an area school, so the same campus, it was a transition into the big school with new kids coming from surrounding country primary schools. And I missed it. My lovely parents being teachers at the school also took information back to show and teach my friends and teachers all about type 1 diabetes. I was horrified. I did not want anyone to know about this thing that had slammed itself into my life. I wanted it to go away. At times, I wanted to die. I was told I would die early. I would probably go blind. Lose my legs. My kidneys would pack up. And worst of all, the thing that killed me, that I would not have children, or if I was to fall pregnant, the baby would be deformed, or stillborn.
I struggled with it through high school. Taking the rebel direction. Dropping one of my two injections of pig insulin each day. Decided there was no point to life, making my blood glucose results up to show my doctor each visit. Staying out late. Hanging around with the party crowd. Trying to feel like I fit in somewhere. Like I was loved. Lovable. Feeling watched all the time. Not managing. Not coping. Surviving.
My next transition from high school to university included leaving my little country town and moving to “the big smoke” (although you can hardly call Adelaide this, to me it was New York!). I did not cope. I had lived with type 1 diabetes for just 5 years. I needed my family. My only family was my boyfriend who moved with me. And he was violent and possessive. A toxic relationship and w hole blog of its own. But it was the only familiar thing and it made me feel strangely more secure…..and terrified at the same time.
Breaking free from this relationship by the time I finished university, I was slightly more comfortable with my diabetes. I started work as a social worker in child protection (again another blog!) I still struggled. I partied. I treated my diabetes with little respect. And myself. I had still never spoken with another person who lived with diabetes except my grandfather who developed it at a late age. I was alone with it.
By the time I fell pregnant with my first son, who is now 19 years old, I was able to be more comfortable with diabetes. But I did not really understand it still. Depression which was probably in my life a lot earlier than this, reared its ugly head as post natal depression. Life was dark. By the time I was pregnant with my second son, who is now nearly 14 years old, I was reaching out. I was burnt out. Depressed. My work in child protection had also taken its toll. Leading to post traumatic stress,anxiety and panic. Diabetes became part of this. I did not know if I was having a hypo or a panic attack. Alongside this, two pregnancies and very difficult diabetes control had led to burn out. I needed somebody, something, some way to make sense of this shadow called diabetes that I had carried with me through so many things in my life. Something to help with the pain. But there was nothing. I made calls. I asked for support, for connections. The answer was, there is nothing,sorry about that. Lots of counselling around my work trauma and learning skills about managing my thoughts, my busy mind and my fears, helped me. Yet there was still a need in me to connect with people who got diabetes. And there seemed there was nowhere I could do this.
And then I discovered the Internet. And the wonderful Reality Check. And my world changed.
Sitting at a family lunch one day talking about all of this and how I would like to do something to help others with diabetes my mum said “you could have a website”. And the rest, as they say, is history. But at that moment my world changed. Not only did I create something that 11 years later is a thriving and growing organisation supporting thousands of people each year, but I finally found peace with my own diabetes.I emerged from its shadow.
The very first time sat in a room with a group of people living with diabetes and we all got our blood glucose monitors out at the same time, I felt alive. I did not feel different anymore. I did not feel alone.
And that is exactly why people with diabetes are so present in the online world. It makes us feel like we are all doing it together. We are not alone in the never-ending, relentless daily tasks of diabetes. We understand each other without words. And that is a beautiful thing.
It was good to read your story. I recently remarried after 10 years of widowhood, and my new husband has Juvenile Diabetes. He has lived with it for almost 40 years. I have learnt a lot but would love to have a forum where I too could ask questions and better understand the condition and it's consequences for all those involved with living with diabetes.
Thanks for sharing. Family plays a big part in diabetes and we welcome family members to join our forums, chats and facebook groups. Also you can access free e-counselling. :-)