Letter writing day - Tuesday 5/10: In February the Wego Blog Carnival asked participants to write letters to their condition. You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling.
This is a letter that I keep thinking I should write but I never actually have. Maybe now I've written it I might actually send it one day.
Dear Dr C.
You probably won't remember me, because I'm sure I'm just one of thousands of patients you've seen in your career, but you made a huge difference to my life, and I wanted to thank you.
I began seeing you when I was about 14, when I was still attending the diabetes clinic in the childrens' hospital. There were a couple of different reasons you became my endo at that point. I was due to transfer to the adult hospital when I turned 15, and this was part of the preparation for moving to the big scary world of the adult clinic. The other reason was that my control wasn't very good at that time. In fact, it was pretty damn awful, I have to be honest. I was on two injections of mixtard at the time, blood testing meters weren't quite at the same level as they are now, and I was going through a fairly extended period of burnout. I was always high in the mornings, no matter what I did, I always seemed to be high whenever I tested, I had no idea about how to adjust insulin (in fact, it wasn't even a subject that was ever broached, so I didn't know it was an option!), and it just seemed like it didn't seem to matter what I did, I'd always be high and I'd get yelled at when I went to the clinic. It wasn't rebellion, because it wasn't like I was deliberately not doing my insulin or eating things I knew were 'bad' for me. I just couldn't see any way for me to make things better, and that crushed what little motivation I had. It just didn't seem worth the effort if the effort gave nothing in return.
You were the first endo I've ever had who recognised what was going on. You set up regular meetings with me, you and a DSN where I went along for an hour once a fortnight and you taught me about managing my diabetes. I knew a lot of the science behind it, but you were able to fill in the gaps, like how I was probably high in the mornings due to hormones. You didn't judge me for things that had gone wrong, or high numbers. You were the first person to tell me that diabetes was *my* disease, that I was the one who'd have to live with it, and that I should be the once managing it. No-one had ever said that to me before, and it was kind of a revelation.
It wasn't all sunshine and lollipops. Burnout doesn't just disappear overnight, and although you encouraged me to keep going with the regular meetings at the adult clinic, when I got there they weren't interested. My appointments were once a year for maybe five minutes, I never saw the same endo twice, there was no continuity of care, and it seemed like the only thing they were particularly interested in was making sure I didn't get pregnant! I fell through the cracks, and I reverted back to the way I was before.
But you planted a seed, which meant that when I moved to Cambridge and attended the diabetes clinic here I *believed* my new endo when he told me I could do better. When they encouraged me to get back on my feet and start managing my diabetes properly, they built on that message that it was *my* diabetes, and that I was the best person to manage it. They helped me learn the tools to do that, put me on courses, got me a pump, and I began to see my results improve.
I don't think that would be possible without the help you gave me. You changed my attitude towards my diabetes, and that has changed my life, and for that you have my immense gratitude.
This is a letter that I keep thinking I should write but I never actually have. Maybe now I've written it I might actually send it one day.
Dear Dr C.
You probably won't remember me, because I'm sure I'm just one of thousands of patients you've seen in your career, but you made a huge difference to my life, and I wanted to thank you.
I began seeing you when I was about 14, when I was still attending the diabetes clinic in the childrens' hospital. There were a couple of different reasons you became my endo at that point. I was due to transfer to the adult hospital when I turned 15, and this was part of the preparation for moving to the big scary world of the adult clinic. The other reason was that my control wasn't very good at that time. In fact, it was pretty damn awful, I have to be honest. I was on two injections of mixtard at the time, blood testing meters weren't quite at the same level as they are now, and I was going through a fairly extended period of burnout. I was always high in the mornings, no matter what I did, I always seemed to be high whenever I tested, I had no idea about how to adjust insulin (in fact, it wasn't even a subject that was ever broached, so I didn't know it was an option!), and it just seemed like it didn't seem to matter what I did, I'd always be high and I'd get yelled at when I went to the clinic. It wasn't rebellion, because it wasn't like I was deliberately not doing my insulin or eating things I knew were 'bad' for me. I just couldn't see any way for me to make things better, and that crushed what little motivation I had. It just didn't seem worth the effort if the effort gave nothing in return.
You were the first endo I've ever had who recognised what was going on. You set up regular meetings with me, you and a DSN where I went along for an hour once a fortnight and you taught me about managing my diabetes. I knew a lot of the science behind it, but you were able to fill in the gaps, like how I was probably high in the mornings due to hormones. You didn't judge me for things that had gone wrong, or high numbers. You were the first person to tell me that diabetes was *my* disease, that I was the one who'd have to live with it, and that I should be the once managing it. No-one had ever said that to me before, and it was kind of a revelation.
It wasn't all sunshine and lollipops. Burnout doesn't just disappear overnight, and although you encouraged me to keep going with the regular meetings at the adult clinic, when I got there they weren't interested. My appointments were once a year for maybe five minutes, I never saw the same endo twice, there was no continuity of care, and it seemed like the only thing they were particularly interested in was making sure I didn't get pregnant! I fell through the cracks, and I reverted back to the way I was before.
But you planted a seed, which meant that when I moved to Cambridge and attended the diabetes clinic here I *believed* my new endo when he told me I could do better. When they encouraged me to get back on my feet and start managing my diabetes properly, they built on that message that it was *my* diabetes, and that I was the best person to manage it. They helped me learn the tools to do that, put me on courses, got me a pump, and I began to see my results improve.
I don't think that would be possible without the help you gave me. You changed my attitude towards my diabetes, and that has changed my life, and for that you have my immense gratitude.
isn't it amazing how people we barely know can change out lives forever? great post! :)
ReplyDeleteIt's a shame and a disgrace that quality of care can vary so much, especially when a person is taking responsibility for their diabetes for the first time as an adult. Thank goodness you encountered one of the good guys. :)
ReplyDelete