Chicken with Needles – by Olly Double


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What do most people think of when they hear the word ‘diabetes’? It’s got to be injections, hasn’t it? When my younger son Tom was diagnosed back in 2000 before he was even two, most of the sympathetic comments were about needles and injections.

‘Poor little boy, it must be so difficult giving him his injections knowing it’s going to really hurt him.’

‘Yes, thanks for that, you’ve made me feel a lot better about having to inject him several times a day with that joyful thought.’

In fact, needles were the least of our worries when he was first diagnosed. Raging highs, terrifying hypos and generally not knowing what the hell was going on with his blood sugar control were much more immediate concerns.

Nonetheless, I shudder when I think about the number of times he was injected and the number of times his fingers were pricked for his blood glucose monitor in his early childhood. Even today, now that multiple daily injections have been replaced by an insulin pump, he still has to have a big old needle inserted into his soft tissues three times a week in order to change his infusion set. Then there are the needles used to insert the sensors for the continuous glucose monitoring system (CGMS) that he uses – which both he and his older brother Joe, who’s also on a pump and CGMS, both say are worse than set changes.

Given all of that, it seems bizarre that Tom is terrified of having any kind of needle inserted into him that’s not part of his regular diabetes control. The main culprits are the flu jab he has every autumn, and the blood test he has every year as part of the annual review by his diabetes team. That’s very different from the regular finger-prick blood glucose tests he has several times a day, because it involves sticking a proper big needle into his vein and drawing out a much bigger amount of blood. A couple of years ago Tom had a particularly horrible year because not only did he have his blood test and his flu jab, he also had to have an extra inoculation for swine flu.

We went to Joe and Tom’s diabetes clinic in London on Tuesday, and when Tom was asked if he wanted to ask the team about his diabetes, the main question was, ‘When will I next have to have a blood test?’

His consultant – who’s not only a fantastic medic but also has an enviably easy-going and affable manner – replied, ‘Oh, not for ages yet.’

But Tom’s terrors were not so easily derailed. ‘Will it be this year?’

‘Well yes, it will be this year, but not for months.’

That wasn’t a very reassuring answer for Tom. Even if the answer had been ‘never’, it would still have been too soon for him. The time just after a blood test is one of the happiest moments of his life, because it’s the longest possible time until the next one.

Now to contextualise this, I used to be pretty terrified of blood tests and injections myself, and indeed I come from a whole family of needle-phobics. My older brother fainted after his BCG jab, and two years later my older sister fainted after hers. I was such a chicken about needles that in the four years between my brother having his jab and me having mine, I regularly sat and fretted about it. I’d try and think of ways I could get out of it and fantasise about new ways of doing the injection that didn’t involve needles. When it finally came to it, the nurse had to keep telling me to relax my shoulder. I was cacking myself so much that my puny adolescent muscles had gone as hard as rock. Then the needle went in and it was far less painful than advertised. I went away chiding myself for having wasted four years worrying about such a little thing. And thinking my brother and sister must be wimps.

Like me, Tom tries to work out ways of getting out of his blood test, and he shared some of his creative thinking with the team at his clinic appointment.

‘Couldn’t I just do lots of finger prick tests and save them all up in a jar and just use that blood instead? Or couldn’t I have a cannula like for my infusion set and just take the blood out of that?’

My wife Jacqui chipped in and said that Tom had once told her that if he ever has a seizure through having very low blood sugars, he’d like them to take a blood test while he’s unconscious so they can use that for his annual review and he won’t have to know anything about it.

In the course of gently explaining why none of these were good solutions, the lovely diabetes nurse said that lots of young people with diabetes dread blood tests just as much as Tom does. Those who’ve not experienced diabetes – let’s call them ‘civilians’ – might find this hard to understand, but as she explained, many children had their first experience of blood tests around the trauma of diagnosis and having to experience them again brings all of that unpleasantness flooding back.

I’m not sure if that’s why Tom hates them so much. As he was so tiny when he was diagnosed, he has no conscious memory of it all. My theory is that it’s about control. He used to do his own injections and now does his own infusion set changes. It must be easier to put up with things pricking through your skin if you decide exactly when it’s going to happen and you control the whole process.

But maybe I’m wrong. Maybe he just hates constantly having sharp objects prodded and poked into him, and the blood test is just the final bloody straw.

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I just read this blog and whilst I’m aware this is a very long time after it was posted I felt I should share my experience!

I am Type 1 Diabetic, and have been for nearly ten years – I’m almost 21 now. I was diagnosed as needle phobic pretty early on, and worked with a couple of clinical psychologists for a few years. I’m still terrified of things like the annual blood test, but we’ve worked out a system that helps no end!

A lot of the comments above were wondering about whether it’s because it’s so out of your own control, unlike your injections and finger pricks. I personally find that’s a really big thing – I feel a lot less scared if I can control it! We’ve started a thing where the nurse will get ready with the needle, but will then wait and won’t actually do anything until I’ve calmed myself down and say ‘yes, go, I’m ready’. It requires a separate personal session away from the masses and you have to find someone willing to do it for you, but if you can it’s fantastic and helps to take out a lot of the stress and fear! I used to get in such a state but now it only takes a few minutes (and no tears!). It’s something worth investigating if it’s as much of an issue as it was for me!

@ Karen Slatter

Hi Karen, many thanks for your comment. There are quite a few things that should be checked annually – you can find a list here.

It’s worth asking your healthcare team to do these checks, and if they’re not already doing so, they really should.

If you’d like some advice on what care your daughter should be getting give our Careline a ring on 0845 120 2960 and they’ll be happy to talk it through with you. We’ve also got a helpful booklet that talks about what care you should expect form your healthcare team which you can download for free here.

Finally, you may want to join the Children With Diabetes group email list – they’re a really helpful group of parents who can offer you any support and advice you may need. You’ll find their website and information here.

Hope this helps :)

As a 17 year old, I feel exactly the same way as your son. I have, and never have had, any problems with injecting myself or finger pricks or infusion set changes, and yet there is something about the thought of a blood test or flu jab that makes me go weak at the knees.
Personally, I think it’s the combination of much longer needles and what’s going in/out. I can’t stand the thought of my blood being removed… it just seems so unnatural. And when the flu jab goes in, it always seems to make a horrible squelching sound that makes me feel so squeamish.

I am terrified of blood tests and cannulation but I have come up with a solution. I asked my GP, who knows that I am a wimp, if there was nothing I could do to to lessen the pain she gave me a prescription for EMLA cream which has been a life saver!

You put it on 1 1/2 hours before the scheduled procedure (it says half an hour on the instructions, but the longer the better) under tegaderm patches which you have to buy from the chemist. He will not feel a thing! I have to go for my HbA1c next week and have EMLA at the ready.

Last time I went a child was being tested and screamed the place down. I think it is utter cruelty to a child to not give him or her a prescription of EMLA as a matter of course.

Test it out before the test so that he knows it works. Put it over the vein, stick a patch on and wait. Then take the patch off, wipe the excess cream and then try poking him with say the point of a tooth pick or something. Do not pierce his skin, it is just to let him know that he will be numb.

Nice blog Olly – our two boys are exactly the same. If I can get them to be forthcoming about why they hate the blood tests so much, I’ll post it up here!

Hope to see you soon,

Tim

When I was first diagnosed age 11, I passed out after my initial blood test in the hospital. I do 5 injections a day but I still don’t like going for blood tests. Every poor nurse that takes one still gets to hear the story of how I passed out and why I don’t want to look!

So true! Great blog. Sounds like the boys cope brilliantly. It’s not easy. Can you tell me what the annual tests are for? My daughter was diagnosed aged 13 months. She is now 5 and I’m not aware of these annual blood tests. Should she be getting these? I guess I’ll ask her consultant next time she’s at clinic. Enjoyed reading your blog!

yes! my kid feels exactly the same way about those extra pokes! i think you might be onto something with the ‘control’ issue. i loved his ideas for avoiding them. our kids can be creative about this business, yeah?

Hi, I am diabetic and have been since I was 12 (I am 26 now) I was always scared of needles, and most people just shrugged it off. All the things your son keeps saying is what I asked/said. I was diagnosed with needle phobia about 3 years ago, and I have been working with someone to get me through it. I will never like needles but after 3 years I am getting better with them. Before I got help I would have a panic attack at the mention of my diabetic blood tests, but now I can get through it (and as a treat after I am allowed a Crunchie – with the full consent of my consultant :)) I would talk to your sons consultant about getting some help with it, from my experience it really does help.

I’ve had diabetes for 25 years and I’m a thirty *mumble mumble* year old woman, and I STILL hate getting blood drawn. It’s a little bit because I’m not the one in control of that needle – at least when it’s me, I can psych myself up and say “Okay, whenever I’m ready… 3, 2…”. I can use whatever pressure and force is comfortable for me. That and the fact that they have to leave that shard of metal in your arm for much longer than any injection lasts. It creeps me out!

I liked your use of the word “civilians” made me laugh :-) And yes, my son is exactly the same with blood tests and any coeliac antibody tests he gets.

I have been a diabetic for 54 years and still hate the needle going into my vein to take a blood sample. Its much more painfull than a subcutaneous injection and, as you rightly say, outwith your control. If he is old enough now show him all the results obtained from the one test and explain how important they are to keep him well.

I was diagnosed with type 1 diabetes 5 years ago. Prior to that I used to regularly give blood and this was my way of facing my fear of needles by doing something for the good of others. All I can say is that I empathise totally. At first I could cope with the 6 monthly hospital appointments/check ups but yip then there is the flu vaccination too and now because I have moved house my new doctors want to test me for their own records. I am literally getting pins in me every 3 months and I am building up a real fear again. It just makes me want to run in the other direction. For what it is worth I try and think of how far we have come since the days of administering insulin, with giant needles, and not the neat little flexi pens we have now. I try and think on the blood tests as being a vital part of what keeps me healthy in mind and body because they give me all the information I need to do this. In some ways we are really lucky that we are looked after so well. Hope this helps.

An excellent blog and oh how true. Have just returned from my daughter’s annual blood test. 5 years into diabetes and 1 year on a pump, this once a year test is such a nightmare along with providing a urine sample – she will avoid both at all costs. Now at aged just 17 she acually told me that both bring back such horrible memories of the day she was diagnosed and the fear she felt that day. I guess that although we live diabetes on a daily basis with our kids we never acually live with diabetes the way they do. On the positive side, in her words “at least thats done for another year!”. Next hurdle is next weeks CGM – still thats another day.