JDRF, the type 1 diabetes charityStoriesJonny Labey, JDRF Celebrity Ambassador, shares his story

Jonny Labey, JDRF Celebrity Ambassador, shares his story

Johnny Labey
Johnny at home with his parents in Jersey

I’ve danced, acted and sang since I can remember, and being a professional dancer and entertainer was a path I always wanted to go down. Now as an adult having been blessed with more opportunities than I’d ever hope to dream of, I’m hoping to push my career whilst also being compassionate and making a difference.

My diagnosis story

However, my journey to this point has been far from smooth. Turning 15 was a stressful time, working hard to make it in a competitive industry. It was at this point that my life changed forever when I was diagnosed with type 1 diabetes.

At school I had experienced the obvious symptoms, running to the toilet 4 or 5 times a lesson and an unquenchable thirst and feeling exhausted.

My grandad had type 2 diabetes so I did a test on his blood glucose monitor and my level was 26.6 – while not life-threatening this was very high!

I was admitted to hospital where I was told I had this condition which could affect my feet – something my future career depended on. This was the hardest thing for me to deal with at the time.

While in hospital I was taught all the dos and don’ts for managing my type 1 diabetes – and then it was up to me – and my poor mum, who was really put through her paces.

I remember being admitted to hospital when my blood glucose levels were all over the place, to be told I just had a bad cold. Something we didn’t realise at the time could have such an impact on my type 1.

Fast forward to now and I always say to people, take type 1 diabetes seriously and keep it in plain sight but also allow it to fit into your lifestyle, not the other way round.

In the first year my mum would put dinner on the table and count all my carbs – it was a very robotic regime – now considered quite old fashioned.

This made me feel that overly cared for, and also that I had a more serious condition in a way.

I did have a serious condition – but I learnt that I could look after myself and take it seriously without having to count every potato.

I have always been a very active, sporty child, doing dance, karate, performing in productions, and if you read my mum’s diary of the time following my diagnosis, it was one of the busiest years of my life.

I just carried on head first and kept active – while taking my diagnosis as seriously as I could.

Luckily I have amazing family and friends to support me – which I know I am very fortunate with.

Jonny Labey in the dance studio
Johnny in the studio

I was admitted to hospital one other time, when I was studying at the Doreen Bird College of Dance, Music and Theatre, when I was struggling with, without realising it, a punishing schedule, starting with ballet lessons at 8.30, a full day of performing  lessons then extra-curricular stuff until 9.30 every night.

But when I went stopped for Christmas, Easter and summer breaks, my activity levels went right down.

This meant my insulin levels had to be completely adjusted. I’m an artist not a mathematician and I wasn’t measuring constantly.

I went along with things, mostly being low in lessons, and high during the holidays the pace of my life slowed down dramatically.

When I got involved in EastEnders I got to put my own input into my character, Paul Coker, so I suggested he had type 1 diabetes like me – giving me the chance to talk about it on a prime time BBC programme.

Talking about type 1 became my new passion – I wanted to raise more awareness about the condition as this is a real problem. Also talking to other people with type 1 diabetes is therapeutic for me – it is really important to hear from other people, get their advice, and discover what there is out there to help you, such as tech.

Around this time I was doing Strictly Ballroom in the West End and this was the first time I thought my type 1 was affecting my performance, as well as my mental health.

I was dancing so much that I got anaerobic respiration which caused my sugar levels to soar, which I didn’t realise at the time, and led me to have mood swings.

This difficult time ultimately led me to set up my blog, Know Your Type. I think the best medication is laughter and communication, so what I really wanted to do was open up a dialogue for people with type 1 diabetes.

Becoming an ambassador for JDRF

This, along with becoming a celebrity ambassador for JDRF, means I am now in a position to help others, something I am very passionate about.

I am working with JDRF on an important peer support project coming soon, and I am extremely excited to collaborate with the charity in order to humanising the condition, helping people to take it seriously and not feel ashamed or try to hide it.

The more people in your surroundings that you make aware of your type 1, the more you will be educating those around you on what it is.

This is not just helping you by talking about it – it is also helping the people who are listening, to understand what you are going through.

People panic about the condition and see it as something food-related. It is so much more than that and I am hoping to get the community talking, host events where people can talk to each other in safe spaces, open up to others, create a union to move things forward, such as decisions in parliament etc.

Also, making sure the diacommunity can rally round each other and benefit from being involved in a community that love and support each other.

I also hope I can use other people with diabetes in a creative way to put out powerful messages about type 1 and mental health. One that will send a message to stay active and enlighten people not to think everything has to come to a halt when you are diagnosed.

As a result of having type 1 I am more regulated than I probably would have been, I think a lot more about how important healthy food and nutrition is.

I am very healthy despite having this serious life-long condition.  Even though we are hopefully nearing an end to it, you can’t put all your hopes into that – you have to think methodically, and take it day by day. Don’t think too far ahead – just be aware of it now.

I also never want to appear as someone who has it sorted, who is a perfect example of someone living with type 1. There is no such thing, even though it would be nice.

The reality is it fluctuates all the time and thinking in that light is more helpful – learning how not to be perfect is something we all need to do, to get through life’s ups and downs anyway.

Ultimately I am a creative artist and while diabetes has played some part in my life, I don’t think it has really altered me as a person all that much.

Jonny Labey is JDRF’s Celebrity Ambassador, he attends JDRF events where he raises awareness of type 1 and empowers discussion about the experiences and issues that connect everyone in the type 1 community. He also has his own YouTube blog called Know Your Type where he interviews people with the condition from all walks of life.