Before I start the letter, I'd just like to point out that this is aimed at those health care professionals that do not seem to have an inkling of what it is like to live with type 1. I know there are some amazing doctors and nurses out there who are just fantastic...this is not for them. I've been thinking about this topic a lot as I am looking to move to a new team here in London, and this is what I imagine I would say to them if they turn out to be non-getters.
Dear Dr/Nurse Who Does Not 'Get It',
I've been living with type 1 for just over 20 years now. Having been diagnosed at the age of just 2, that's the whole of my life as far as I am concerned - I don't know what it is like to live without it. I'd really like you to remember that sometimes; I know no life without this thing. I have no living memories where type 1 has not been part of them - I can't imagine life without insulin vials, test strips and annual bloods. I can't imagine doing any kind of exercise and not having to plan it out and feel like I'm doing an experiment on myself. I definitely can't imagine looking at a plate of food and not worrying about what it is going to make me feel like in an hour or two. I have no idea of the concept of a 100% carefree, worryfree childhood (I was told from a young age I would die of a complication of type 1).
The thing is, when I walk into your room, I sort of need you to forget about everything else, just for a few minutes. I'll discuss my numbers with you and any problem areas I need a hand in ironing out. I'll tell you how much living with this thing drags me down some days. All I'm asking is that for a couple of minutes you attempt to put yourself in my shoes, instead of thinking that throwing numbers or statistics at me will help.
After 20 years of this game, I'm pretty down with it. My numbers are pretty predictable (which does not mean stable); my body (and when I say body please read: my body AND my diabetes) behaves in a way that I have come to know almost intuitively. That isn't to say there aren't some surprises along the way - but I'm pretty in tune with my body. So when I present an issue to you and you give me a textbook response, please don't be shocked if I ask for alternatives. I've probably tried those text book suggestions; I don't get to see you very often, so I have to have other resources. (here's looking at you, DOC).
I need you to trust me, too. I need you to know that I know my body best. I need you to give me the credit I'm due for doing this diabetes thing every day. I'm pretty open at trying new things and listening to suggestions; I'll always listen to what you say. Please don't be afraid if I challenge you on something; I need you to hear my thoughts on what you are saying.
I remember the first time I felt empowered in an appointment. Shortly before the appointment, age around 10 or so, I had asked my mum why I couldn't have a pancreas transplant (which in my head, was the answer to this whole type 1 problem). Knowing my appointment was coming up, she told me to ask my consultant, which I did. He was fantastic and explained to me at a level my 10 year old self could understand; that the thing with type 1 is that even if I had new insulin producing cells, those would be attacked too. Plus the amount of drugs I would have to take to keep my body generally rejecting them would be too much. Looking back, what strikes me about that conversation is the way he did not patronise me; he did not talk to me as if I'd asked a stupid question. I'd really like to continue feeling empowered and for you to be willing to share your knowledge with me.
I also need you to appreciate, not necessarily understand, the total fear that can come with living with a chronic, life long, can-kill-you-when-it-wants kind of condition. I am totally terrified of what will happen in the next few years in regards to my long term health; will I see complications? Are my kidneys going to be okay? Will I eventually end up with eye damage? The things I hear, mainly from the DOC, say that actually I have a pretty good chance of not developing complications. But on the other hand I could develop all of them. It's why I'm pretty anxious about my control.
I'd also love it if you could have a little appreciation of the word 'burnout'. This does not mean I am noncompliant and I don't care about my type 1; actually it's usually caused by caring TOO much and feeling very much drowned in living with it. It's the time when I really need some support and some help.
I've been playing this type 1 game for 20 years. It's basically a damage control game; I need to minimise the impact of my dodgy pancreas on the rest of my body. I can't do that alone and whilst I know that unless you live with type 1 you won't be able to fully understand it, I just ask for a little appreciation. Talk to me! I'll tell you what it's like (it's hard). I'll give you my honest and frank opinions on living with a condition like this (doable but so much more bearable when you have support and understanding. Also, scary).
With hope,
Siobhan
I've been living with type 1 for just over 20 years now. Having been diagnosed at the age of just 2, that's the whole of my life as far as I am concerned - I don't know what it is like to live without it. I'd really like you to remember that sometimes; I know no life without this thing. I have no living memories where type 1 has not been part of them - I can't imagine life without insulin vials, test strips and annual bloods. I can't imagine doing any kind of exercise and not having to plan it out and feel like I'm doing an experiment on myself. I definitely can't imagine looking at a plate of food and not worrying about what it is going to make me feel like in an hour or two. I have no idea of the concept of a 100% carefree, worryfree childhood (I was told from a young age I would die of a complication of type 1).
The thing is, when I walk into your room, I sort of need you to forget about everything else, just for a few minutes. I'll discuss my numbers with you and any problem areas I need a hand in ironing out. I'll tell you how much living with this thing drags me down some days. All I'm asking is that for a couple of minutes you attempt to put yourself in my shoes, instead of thinking that throwing numbers or statistics at me will help.
After 20 years of this game, I'm pretty down with it. My numbers are pretty predictable (which does not mean stable); my body (and when I say body please read: my body AND my diabetes) behaves in a way that I have come to know almost intuitively. That isn't to say there aren't some surprises along the way - but I'm pretty in tune with my body. So when I present an issue to you and you give me a textbook response, please don't be shocked if I ask for alternatives. I've probably tried those text book suggestions; I don't get to see you very often, so I have to have other resources. (here's looking at you, DOC).
I need you to trust me, too. I need you to know that I know my body best. I need you to give me the credit I'm due for doing this diabetes thing every day. I'm pretty open at trying new things and listening to suggestions; I'll always listen to what you say. Please don't be afraid if I challenge you on something; I need you to hear my thoughts on what you are saying.
I remember the first time I felt empowered in an appointment. Shortly before the appointment, age around 10 or so, I had asked my mum why I couldn't have a pancreas transplant (which in my head, was the answer to this whole type 1 problem). Knowing my appointment was coming up, she told me to ask my consultant, which I did. He was fantastic and explained to me at a level my 10 year old self could understand; that the thing with type 1 is that even if I had new insulin producing cells, those would be attacked too. Plus the amount of drugs I would have to take to keep my body generally rejecting them would be too much. Looking back, what strikes me about that conversation is the way he did not patronise me; he did not talk to me as if I'd asked a stupid question. I'd really like to continue feeling empowered and for you to be willing to share your knowledge with me.
I also need you to appreciate, not necessarily understand, the total fear that can come with living with a chronic, life long, can-kill-you-when-it-wants kind of condition. I am totally terrified of what will happen in the next few years in regards to my long term health; will I see complications? Are my kidneys going to be okay? Will I eventually end up with eye damage? The things I hear, mainly from the DOC, say that actually I have a pretty good chance of not developing complications. But on the other hand I could develop all of them. It's why I'm pretty anxious about my control.
I'd also love it if you could have a little appreciation of the word 'burnout'. This does not mean I am noncompliant and I don't care about my type 1; actually it's usually caused by caring TOO much and feeling very much drowned in living with it. It's the time when I really need some support and some help.
I've been playing this type 1 game for 20 years. It's basically a damage control game; I need to minimise the impact of my dodgy pancreas on the rest of my body. I can't do that alone and whilst I know that unless you live with type 1 you won't be able to fully understand it, I just ask for a little appreciation. Talk to me! I'll tell you what it's like (it's hard). I'll give you my honest and frank opinions on living with a condition like this (doable but so much more bearable when you have support and understanding. Also, scary).
With hope,
Siobhan
8 comments:
An excellent post Shiv!
Thank you, Shiv! I think I may copy this and keep it in case I ever need to use it to fight for my two, as I think you've articulated exactly what most T1s want to say to their HCPs. You're a star. Good luck finding a fabulous team (or educating the team you find to be fabulous!).
Fab!
Love from Jimmy & Daisy's mum
xxx
Perfect x
I agree - perfectly expressed. Hope you don't mind but I'm going to copy & show to HCPs or whoever when I'm too upset to articulate how I'm feeling (but not with your name attached!), hope that's ok? X
Perfect, Shiv!
Totally agree! This is why I'm conducting research into emotional wellbeing and self care in young adults with type 1. Hoping to publish the findings and disseminate amongst hcps to improve understanding of the emotional impact of the disease. 15 min online study for 16-25s, click link below to take part http://surveys.fahs.surrey.ac.uk/Self_Care_in_Diabetes/
AuntSue
You are a wise young man, and really aware of how to handle yourself and your malady. You are doing a great job of standing up for yourself with medical personnel. My daughter became diabetic when she was 15, and now at 37, she is married with a healthy little girl. Although she has a good A1c, she still struggles sometimes. In my late forties I became a type 1 diabetic. I want to keep my sugars under control, but too often forget to take insulin when I eat an unplanned meal or snack,(no pump) and sometimes have high numbers for no reason I can find. At 62, so far my eyes and nerves are still healthy and showing no signs of diabetic damage despite often crazy numbers. I have taken good vitamins all my adult life and I think that helps. Besides a good multi-vitamin, lean protein, lots of fresh fruit and veggies, I also take B-100 and C-500, magnesium and zinc. The B-100 helps my hands, (two surgeries for carpal tunnel, still not normal) and the extra C and zinc help my immune system (seldom sick, and then only mildly) The magnesium helps with muscle cramps I am prone to. I do think the B and C vitamins also help protect my nerves and blood vessels from my often high sugar levels. NatureMade is a great vitamin brand that is also affordable and can be found in Walgreens, Riteaid and Walmart. Other brands of B vitamins often do not help the hand pain from the carpal tunnel, so I stick with NatureMade. I pray you live a healthy and long life, full of joy and love.
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