Type 1 Discovery JDRF UK

"You control the diabetes, it doesn't control you."

Television and film star James Norton, is one of JDRF’s celebrity supporters. He’s joined us through several campaigns, raising awareness and supporting type 1 diabetes research. Here James shares an insight into the way he works to make sure type 1 diabetes doesn’t hold him back

Has type 1 stopped you from doing anything you wanted to do?

When I was diagnosed, I was 22 and at drama school – I had a two-day type 1 induction and what I distinctly remember being told was: ‘you control the diabetes, it doesn’t control you.’

I also have a little sister who has lived with type 1 from the age of nine, so I have had an incredible example with her – especially as she was adamant not to let it stop her from doing anything.

There will always be the inevitable times when you have to take more care, as well as preparation to go anywhere – but I am adamant that it won’t limit what I can do.

The only thing it did once stop me from doing was scuba diving on holiday because I didn’t have the

right letter from my GP. 

As far as my work is concerned though, it hasn’t stopped me at all – although sometimes I have a hypo and have to take a break and then get my energy back.

I have chosen not to go down the pump route because of the nature of the work I do. With having to get in and out of costume, the pump just isn’t the best option for me.

The great thing is I now have a Dexcom CGM, which provides peace of mind by allowing you to switch off the part of your brain that thinks about checking your levels every other minute.

So, I can give it to someone on set and when it buzzes, they can come over and tell me what it’s saying.

The share feature within the G6 also allows for me to share my data with my colleagues, family and friends off stage, so they can monitor my levels and alert me only if necessary when I’m low or high.

Film sets are intense environments – and so is the stage. I used to sometimes forget about my diabetes

and run high, so having CGM technology has provided massive relief.

Are film sets accommodating to your needs with type 1?

I just make sure, without making a big thing of it, that I tell the people who need to know, like the  director, and the people who do the running around on the film set. You create little codes, like a quick nod – and they know what you need.

I have contingency plans in place. My pen is always with the make-up bag for example – as you get a makeup refresh every 10 minutes – so while they are doing the powder, I will correct my glucose levels.

I am on two insulins - Novorapid and Lantus, and I choose to do more injections and keep my control

within good parameters that way. But having a CGM means I no longer have to stop everything and do finger pricks throughout my day. However, having a phone on set is sometimes an issue. I have heard of directors throwing phones in a bucket of water if they go off.

There are certain important scenes that need total silence, but with Dexcom you can’t override the alarm as people have to know they are going low. While this has caused the odd disturbance, I am really lucky that I can incorporate the condition so easily into my working life.

On stage I can’t check my phone, so I have someone off stage checking for me, to make sure that I am relatively balanced. And if there is a kitchen or drawers on the set, I’ll make sure there is a bottle of juice stored in there just in case.

And if it’s a period piece, I’ll ask the costume department to stich me some extra pockets so I can keep Dextrose or Lucozade tablets on me.

Do you know many other actors with type 1?

Jeremy Irvine is one and we always seek each other out at events, we are both on the Dexcom G6 system and its always lovely meeting fellow diabetics.

I was at a dinner once with Jeremy, the model Bambi who also has type 1, as well as my sister and it

happened that the first courses were low in carbs. Having given ourselves insulin, we all ended up having hypos together – and had to demand juice be urgently brought to our table.

I love talking to other people with type 1 diabetes and if I see someone giving themselves a jab, I will go over to speak to them, even if they are people I have never met. For some reason all the people

I meet with type 1 seem to be exceptionally cool.

It is reassuring to know there are other people dealing with the same condition as you - it normalises it.

Sometimes I forget that other people don’t have it, so I make a point of not ever hiding it, to normalise it for other people – but a lot of people aren’t used to seeing type 1 diabetes.

What are your type 1 management secrets while on location?

My secret is always having fruit juice. I know juice isn’t as easy to know exactly how much you are taking but you soon get used to it and I feel less reluctant to drink it.

For a long time, I used Dextrose but switched about three years ago to juice, so now I always have a bottle in my bag and by my bed, with a straw so I don’t need to get out of bed and brush my teeth again; one of the real irritations with type 1 is the sleep disruption.

What advice or messages of support would you like to pass on?

While I am very lucky to have access to CGM technology, I know lots of people currently don’t. Also, having a mum and sister with the condition has really helped. I also have a great support network and live near my diabetes team in London, which has excellent care.

There does need to be more access to CGM technology, especially for young people. We need the government and NICE to make CGM technology more widely available. It fosters a false economy to not spend money in the earlier stage on life-changing management solutions like CGM technology, and then spend it on care for things like complications later on.

I didn’t talk about my diabetes when I was first diagnosed but when I started to more and more, I felt relief. And once I did, I realised lots of people are dealing with something too.

There is an amazing community, through JDRF and Diabetes UK and other people with diabetes on social media you can talk to now, compare notes and feel a sense of solidarity.

I think one of the weird positives of having type 1 diabetes is it allows you a certain level of empathy – which we talk about a lot in acting – empathy is our currency – so an in-direct silver lining is that my type 1 diabetes reallyencourages this. 

So, my advice is to talk about it, be open and don’t allow yourself to feel embarrassed – as this limits you.

If you go high or low – try not to worry – put precautions in place and do everything you can to give

yourself the right attitude and the right approach.