Thursday 21 November 2013

An Open Letter to Diabetes

I was asked to write a blog post about how it feels to have Type 1 diabetes and I said that I would love to! This really got me thinking. I mean I live with the damn disease every day but I don’t always think about it.  I think I actually avoid thinking about it for many reasons.  I decided to write an open letter to diabetes explaining how I feel about it (him? her?).
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Dear Type 1 Diabetes,

We have been together for just over two years now and I have never really told you how I feel about you.  First of all I want to make it clear that I do not want to be with you, never have and never will.  Unfortunately for us both it looks as though this relationship is here to stay.  I think honesty is very important in relationships, so here goes.

I really feel like this is a one way relationship.  I spend a lot of time thinking about you every single hour of every single day and I do a lot to take care of you.  Sometimes I make a mistake and you let me know, but often I feel like I do everything right and you just act like a total jerk.  You are very needy and time consuming; sometimes I feel so drained by you and wish I could ignore you.

The times you sneak up on me are not appreciated and I wish you would stop.  Like at Thanksgiving when all my family was around and you decided you needed to be the centre of attention.  Sitting at the dinner table with my loved ones with my insides shaking, my brain turned to utter mush and drenched in sweat was not cool.  I felt terrified I was going to pass out and really had to concentrate to keep my eyes open.  I could tell everyone was worried and I don’t like worrying my loved ones.

On that note, you make me feel self conscious at times.  I often feel stares from strangers when I am testing my blood sugar or funny looks from people when I fish out my insulin pump.  This is not so bad really.  It is when I have important things to do I worry you will throw a temper tantrum.  Like when I have an important work meeting and I go low or high.  Having to discreetly fish out glucose tabs and force them down without making a fuss.  Trying to articulate clearly in a meeting when my head is so sluggish and words won’t come together and things I know well disappear from my mind.  Or in the middle of a tough spin class and no matter how much juice or glucose I take you won’t listen and I have to stumble off my bike, explain to the instructor in front of the entire class that you are acting up and I have to sit down on the floor.  The looks of pity I get make me feel so self conscious and I want to disappear into a hole at times.

You won’t be surprised to hear that at times you frustrate the hell out of me and in fact have the ability to make me very angry.  Why can I eat the same breakfast week after week with no issues and all of a sudden you decide to change things up, sending me skyrocketing into orbit or down low into the depths of despair?  Why I can have many days of successful runs, swims or long bike rides and you behave like a perfectly trained pet and then suddenly decide you don’t like our usual routine and throw me right off.  Why sometimes you do prevent me from doing the things I love.  This one is the one that makes me so mad. I spend a lot of time taking care of you in order that I can do what I want.  

One other thing, you are bloody expensive to take care of!  Between the test strips, meters, pumps, needles, pump supplies, insulin, glucagon, back up supplies, bigger purse, extra food and all of the doctors expenses you are one high maintenance partner to lug around!

You also make me feel very scared at times.  When you give me high numbers for no reason and my head swims, eyes ache, body parts go numb and I just want to sleep.  When you give me scary lows which make my heart nearly pound of my chest, my vision go blurry, my mouth and tongue go numb, sweat to pour off me and to jumble my brain to the point where sometimes I am unable to speak.  When I wake up with a low blood sugar shaking and trembling only to realize that I am lucky I woke up at all.  You make me scared to go to sleep at times for the fear of not waking.  You have already done damage to my eyes, my teeth and the nerves in my body.  My feet still burn and tingle as a reminder that you are closely watching me, and it terrifies me. What do you have in store for me next?  My organs? My limbs?  It is scary to feel so vulnerable and helpless.

You do often make me feel determined however, so I guess that is one good thing to come out of this relationship.  I have been able to educate others, I have been able to do triathlons and have big plans for other distance events.  I have been able to meet and connect with some amazing people out there because of you.  Don’t allow that to make you feel too happy however, as we often spend a lot of time discussing how we wish you were no longer around.

The truth of it all is that you make my life harder.  You are my ever constant companion who is very deceiving to others.  People look at me and assume I am just fine. I mean, I look pretty healthy and do a lot of activity, but looks can be deceiving. You are exhausting and quite frankly I wish you would take a hike.

Yours begrudgingly,



  1. Jocelyn this was wonderful. So expressive and I love your take on the idea of what diabetes feels like. Sometimes I just wish someone was beside me to be all, "I know dude!" and not look at me with that pity. Pity makes it worse. You'd never give me pity.

    I've been reading your blog since you started blogging and you've already come a long way. I'm so glad you wanted to write this!

    1. Thanks Scully! I often wish someone was also beside me who just knew what it was like. Someone to hand you some Dex and give you a thumbs up :) Thanks for the idea to write - often I am not sure what to write and love having a topic!

  2. Yeah, that pretty much sums it up.