Emily Barran is a Community Engagement Coordinator based in the JDRF office in Leeds.
There are certain days where you get a smack-in-the-face reminder of how serious type 1 diabetes can be and how quickly things can go wrong. Most of the time I forget I have the condition – I get on with it as part of my routine. I feel like I don’t need to broadcast it but rather try and live life as close to ‘normal’ as possible.
But 22 May of this year certainly wasn’t normal for me.
I was on holiday in Cambridge with my boyfriend Andrew for the weekend and on the Saturday we had visited museums, eaten some amazing food and explored the city. I felt happy and relaxed. On Saturday evening I changed my pump cannula when I got back to our apartment and headed for bed feeling tired from the day’s excitement.
When I awoke, all feelings of happiness quickly vanished. I felt incredibly sick and dizzy. Determined to get packed up and make our train I tried to just put the feeling to the back of my mind. I told my boyfriend something wasn’t right and he encouraged me to check my blood glucose level. It was around 15, which I thought was high – but usually that isn’t a crazy high blood glucose level for me. So I corrected with a bolus and got ready to leave.
We headed for the train station and as I got on the train, all I could think of was being sick. Sure enough I was. And then again. I couldn’t think straight, I could barely see and things were getting worse. Luckily because Andrew was so clued up, he had the idea for me to change my cannula. He assisted me and when I pulled the old one out, it was completely bent, meaning no insulin had been delivered in the night.
Managing a hyper
Hyperglycaemia, or a ‘hyper’ is when people with type 1 diabetes haven’t taken enough insulin to match the carbohydrate that they have eaten, which means that blood glucose levels are too high. Click here to learn more.
I changed it with his help and was trying to correct my rising blood glucose levels. But it couldn’t happen fast enough. I started to go in and out of consciousness and at this point Andrew said he would call for the ambulance (luckily this was when we were changing stations at Stevenage). He helped me off the train and called 999 – while carrying all our bags and helping me walk so I could get to where the ambulance pulled in.
However, things did not go so smoothly at the station in Stevenage. To my horror, the barrier attendant would not let us leave the station without presenting our tickets – even though I was unable to do anything (as I was nearing passing out) and Andrew was on the emergency call. Andrew had to come off the phone to explain to the attendant that I had type 1 diabetes and was currently very poorly and needed to get to the ambulance ASAP. He replied nonchalantly “I don’t care, I still need to see your tickets”. My partner was struggling to keep on the phone to 999, look after me, carry our things and on top of this search for our tickets. When he eventually found the tickets and presented them, there was even a pause from the attendant before he let us out and nobody assisted us to the ambulance or helped with our bags.
I felt like no one cared or understood the gravity of the situation or how serious type 1 diabetes was.
This is why I am writing this blog. Type 1 is an often invisible condition, which can be life threatening. If Andrew hadn’t been there looking after me in the station, what would have happened? I had never experienced any of the discrimination that I have read so much about before, until this moment. I hear of people having hypos and people thinking they were drunk, or restaurants not offering to help when someone needs something sugary.
This problem cries out for some proper training and education in various settings – train stations, airports, cafes, restaurants, bars, nightclubs…the list goes on. People need to understand what type 1 is, because in that helpless moment that person needs you to understand. My advice for any public space is get clued up on type 1 (read our JDRF site). You will soon see that type 1 diabetes is very serious indeed.
If you are a parent of a child with type 1, spread the word! Let’s make this invisible condition visible, to safeguard us against discrimination and negligence. It’s all about education, education , education! JDRF are here to support you!
JDRF contacted the rail company responsible for Stevenage railway station – where Emily experienced the severe hyper. Govia Thameslink Railway issued the following statement:
‘We were very concerned to hear about this couple’s experience. Our staff really do pride themselves on doing their best to give great customer service and this behaviour is very much out of character. We are investigating the incident thoroughly and would meanwhile like to extend our apologies.’