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An open letter to HCPs who do not 'get it'

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

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