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  1. Finding Neverland & The Velveteen Rabbit

    Saturday, 16 October 2010

    At the start of November, I will have been doing this whole diabetes thing for a year and a half. Whether you think that's a long time or not is, I think, a matter of perspective. You can accomplish a whole lot in a year and a half. To channel my musical theatre nerd for a moment, let us consider Rent. There are many ways in which you can measure a year. They suggest a whole variety of things, but also measure a year as 'five hundred twenty five thousand, six hundred minutes'. So half that again would be... according to Google.... 788 923.149 minutes. Yes I googled it. That's far too much maths to be doing in my head on a Saturday. 

    My point being that if you look at a time like that, it suddenly seems like an awfully long time. On my part, dealing with T1 has become such second nature in a lot of ways that it feels strange to think about 'the time before', because that's almost like another person these days. But that's how I look at it. Other people will see it differently. And that's what I really wanted to talk about. 

    So I have Type 1 Diabetes. Big revelation there, but it's true. I was diagnosed at the age of 24, and apparently 'well past' the prime age for T1 diagnosis. It does seem that T1 is thought of by many as a 'kid's disease', being that yes, the prime age bracket for diagnosis is childhood, and for heaven's sake, it used to be called Juvenile Diabetes. What does that mean for the rest of us? Kids with T1 grow up. Adults get diagnosed with it too. I know I'm not the only one who was diagnosed outside of childhood or puberty. 

    I remember being in hospital after being diagnosed. A doctor (who is now my consultant) came and asked me if I wouldn't mind talking to some medical students. Because I was 'unusual', and they 'almost never got someone being diagnosed outside of childhood.'. I was put on metformin as well as insulin at the hospital as well. Because I was clearly in DKA, but they still weren't sure I was a T1 for a couple of days. Because I was 'too old'. This did make me feel just a little bit like there was something wrong with me. Apart from the whole broken pancreas thing, obviously. 

    Like I say, I know people who were diagnosed outside of childhood, but the majority of T1's that I know were diagnosed as children or teenagers. They're the norm. So what does that make me? 

    I've thought long and hard about how to say what I'm about to say. Sometimes life as a T1 diagnosed as an adult can be a bit 'lonely', for want of a better word. You were never a 'child' with diabetes, and as far as I know, my mum and dad have never sat up at night thinking about my diabetes. They've never had to 'deal' with it - it's always been my thing (please feel free to jump in if you feel I'm wrong, Mum, since I know you'll be reading this!).

    I have heard from various sources that I 'don't understand', because I never had to deal with growing up with D. I'm an adult, and I've not had their many years of experience. But that doesn't mean that I don't know a thing or two. I've been dealing with this myself since day one. Sure, I've had a lot of help from wonderful people, but the shoe drops with me and no-one else. Just because I haven't been doing it as long, doesn't mean that I don't know what I'm doing. 

    I was amazed this summer, watching twitter, and reading the many blog entries about
    CWD: Friends For Life Conference. I had always assumed that this event was....well, for children, as the name does suggest. I would never have considered attending, because I'm not a child with diabetes, nor am I a parent of a child with diabetes.  But then I saw all the reports coming in about it (and the Roche conference, but that's another case entirely!). And I wished I was there. I think it's about needing a sense of belonging.

    I will never be able to reminisce with you about 'way back when'. I never went to diabetes camp. I never had to deal with teachers not understanding. I never went to a prom or graduation and worried about it. But we're all here in the same boat. We all have 'Lost Boy' pancreases (pancrei?). One day they decided not to grow up, and all ran away to Neverland.  We have the pancreases that never grew up. Mine just ran away a little later. And despite that, I'm here, and I'm on the same journey with you. I test, I carb count, I inject. I hypo, I hyper. I get blood drawn, I think in numbers. It's like in The Velveteen Rabbit, which was one of my favourite books as a child. I do all these things that you do as well, whether you've had T1 since childhood, or if you're like me, and joined in a little later in the game. Regardless of the starting point, we're all real.

  2. 4 comments:

    1. Kim said...

      I'm sorry to hear that others have told you that you "don't get it". I was diagnosed as a child, which means we've gotten to the same place by different routes. But like you said - someone who has lived with D since chlidhood and someone who was diagnosed as an adult have so very much in common. We all have the same daily crap to deal with, and the same worries for our futures. We can all celebrate successes and provide support during hard times together.

      I sometimes wonder if being diagnosed as a child is "easier" than being diagnosed as an adult. I don't really remember what life was like before the D. I can't miss what I don't remember (though I can still be mad about it sometimes...). Someone such as you who lived life in one way for so long, established a way of living over many years, and then had it all turned upside-down - well, I have a great deal of admiration for how well you adapt and deal with it. That would be so, so tough.

      Thanks for sharing your thoughts on this. I hope nothing I've said or posted has made you feel that way. I'll always think of us as being on the "same team", and I hope others feel that way too. :)

    2. Courtney said...

      I agree with Kim - in certain ways, it would be harder to cope if you were able to remember the way it was before you were diagnosed. As always, great post raising awareness about different types of T1s. The adult-diagnosed T1 is such an important voice to have in the conversation!

    3. Melissa E said...

      Hey Becky, I just started reading your blog and this post hits very close to home! I am 30 and I was diagnosed 3 years ago this past June. I was just about to turn 26, had just finished grad school that previous Dec, got married the previous Aug, started a new job and then I was diagnosed and my whole life became a whirlwind of change. Adjusting to having D after living 25 years without it was very hard. I don't think it matters how long you have lived with D, all of us deal with the emotional and physical aspects of this disease on a daily basis, no matter if it has been 1 day or 30 years. Great posts!

    4. Shan said...

      I found your blog a few months ago, and thank you so much for writing this post! I'm 29 years old, and I was just diagnosed the end of April. It has been a lonely road, and more difficult than I expected it to be. But I am grateful to those out there, like you, who have blogged about their experiences! It helps me realize that I'm not alone in this! :)

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