Coming to terms with a type 1 diabetes diagnosis

Realising the signs

Warning bells had started to ring a few days before diagnosis for Ruth. “Fleur mentioned that she was constantly thirsty in class and felt bad putting her hand up to get water. She is a good pupil and it bothered her that she had to do this,” says Ruth. “I didn’t pay much attention to it, but it was logged at the back of my mind.

That weekend, we stayed with friends in Devon and I noticed how much more she was drinking and how often she was going to the loo. She was up most of the night on the Saturday and was quite delirious. On the journey home on Sunday, she kept needing the toilet and couldn’t stop drinking water. I still hadn’t mentioned anything to my husband at this point but I was sitting in the passenger seat Googling her symptoms. I slowly realised that all the signs were pointing to one thing, although she hadn’t wet the bed. Then that night she wet the bed. I took her to the doctor at 9am on Monday morning. He checked her blood sugar and it was 26. The diagnosis was immediate. We were sent straight to hospital and were there for 5 days.”

Getting initial support from professionals

The family knew nothing about type 1, so the diagnosis came as a shock, but the family found comfort in the professionals around them. “The paediatric diabetes team was the most immediately helpful. The team is made up of nurses, consultants, dieticians and psychotherapists and they visited us continually in hospital to educate us and give us the knowledge and ability to go home and manage the condition ourselves as best as possible. We were also given a Kidsac from Breakthrough T1D UK which proved invaluable. Although Fleur was not much of a cuddly toy girl before diagnosis, she barely put Rufus down in hospital. He was with her throughout her stay and I even gave him a hug every now and then!”

Finding other sources of support

Six months after diagnosis, the family found they were gaining greater support and knowledge from forums, research, conversations with other parents than from the medical team, who Ruth describes as “extremely busy and overstretched. Type 1 requires an intensive individualised approach and a more structured management than we seemed to get from our medical team.”

Extended family overwhelmed Ruth with their support and desire to learn about the condition, but not everyone’s input is as valuable, she says. ‘The friends who don’t really listen, and just tell you that ‘diabetes is so manageable these days’ and that it’s ‘just like having a new baby’ are not what you need. Those who listen and want to learn are incredibly important in your journey, especially in the beginning. I have become closer to certain friends in a way I would never have expected.”

Siblings can often feel a little isolated in the early days of diagnosis, as it can feel that the whole family’s attention is focused on the child with type 1, but Ruth is impressed at the way Fleur’s younger brother has handled it. “He is patient and understands that his life also has to stand still occasionally while we treat a hypo. He also gets a load more jelly babies than he used to!”

It gets easier

It’s still early days for Ruth and her family, but they have some advice for any parents whose child has been recently diagnosed. “Don’t stay awake at night Googling the condition. You may have known nothing about it before diagnosis but it’s important not to take everything on board while you’re still grieving for your child’s old life. It gets easier, day by day and week by week. We are only six months into our diagnosis and already we are stronger, clearer and happier. It won’t take long to get on track but give it time.”

“People will say all sorts of hurtful things to you and your child, and they will confuse type 1 and type 2 diabetes. Try not to be offended, and see it as an opportunity to educate them and raise awareness.”