Alex Wild has lived with Type 1 diabetes since the age of four. Growing up she struggled to talk about the condition. It wasn’t until she attended the NHS DAFNE course that she was finally able to talk about her diabetes. Last year, Alex set up a support group for other adults with Type 1 diabetes. As part of Diabetes Week we invited Alex to the House of Lords to share her story.
I’m Alex. I’m married and we have a son who’s 7. I work part time in a preschool and I’m studying at University for Early Years Professional Status. I have also lived with Type 1 diabetes since 1979, when I was aged 4.
I can’t remember much before diagnosis, so life with diabetes is all I’ve ever known; it’s just a part of me and who I am, albeit a part of me I’ve never particularly liked. I remember being something of a novelty at primary school, and throughout secondary school and my teenage years I’d have done almost anything to be rid of diabetes.
A large part of growing up is about being an individual whilst at the same time fitting in with everyone else – living with diabetes makes this incredibly difficult. A lot of the time I have felt rather isolated – furious at other people’s misconceptions about diabetes yet unwilling to talk about it for fear of highlighting my difference to others.
Looking back now I honestly feel if I’d known someone else with diabetes to share my feelings and experiences with, I would’ve been more accepting of my diabetes and certainly happier in myself. Who knows, if only I’d spoken out more I may have found another person with diabetes also feeling isolated and unhappy.
When I was in my mid-twenties, I started a new job and there was a chap in the next office who also had Type 1. He was fairly recently diagnosed, and we often joked about setting up a ‘vigilante group’ to correct people’s misconceptions about diabetes. For the first time I began to see diabetes in a different light.
After a couple of years I left work as I was pregnant and relocating with my husband’s job. I was back to no regular contact with anyone else with diabetes. It was at this time though that I finally started to take my diabetes seriously, as being pregnant meant another life would be affected by my actions. I tested my blood glucose far more regularly than I ever had before, I took more notice of what I was eating, I made sure I kept my appointments at the diabetes clinic.
After I had had my baby, I found out I had retinopathy in both my eyes, for which I have had some laser surgery. I have been told that suddenly tightening up diabetes control can lead to complications such as retinopathy, and although my sight has not been affected, the upset I felt following the diagnosis and during treatment may have been avoided if I’d had better control throughout my life.
It wasn’t until two years ago that I finally started to accept my diabetes. I desperately wanted an insulin pump and one of the hoops I needed to jump through (as I saw it) to get one was to attend a week-long DAFNE education course at my local hospital. The thought of spending a week stuck in a room with seven other diabetics, talking about diabetes, filled me with dread and horror.
I could never understand why anyone would want to go to a support group and talk about ‘what is wrong with us..’ But it was actually the best thing I’ve ever done in terms of my diabetes. Aside from learning something new about diabetes every day of the course – which I never imagined would happen after living with it for 30 years! – I met some really lovely people who have become firm friends.
It’s hard to describe just how great it feels to meet someone ‘just like me’ who has lived through the same experiences as me, and who can help me with problems using their own personal experiences. I do admire the work my consultant and DSN do, but diabetes doesn’t always work the way the text books say it should, and hearing from ‘real’ people with diabetes about how they deal with their own diabetes has proved invaluable to me.
After DAFNE, I started volunteering on awareness and fundraising events for Diabetes UK, and soon decided with one of my DAFNE friends to set up a support group for people with type 1 diabetes in Nottingham, as I would love for others to benefit from peer support as I have.
The group launched in October last year and we have been delighted at how it has taken off. We alternate between ‘formal’ meetings with a speaker, and ‘social meetings’ which so far have taken the form of an evening in the pub. Our last social evening was great fun, and no one would’ve guessed that the group of people laughing in the corner were all living with a chronic condition.
The majority of us have found that approaching diabetes with a sense of humour helps enormously in dealing with this very serious issue. Being open and honest with each other, talking about the way we really feel, asking one another about things that worry or frustrate us, helps us to feel more relaxed about diabetes, more confident and less isolated. There’s always someone else who has felt the same way as us at some point.
Since I have formed a network of friends with diabetes, I have found it much easier to talk about it with everyone – it’s usually more difficult to stop me talking about it! – correcting those misconceptions that once infuriated me so much and explaining what life with diabetes is really like.
I would still gladly be rid of my diabetes given half the chance, but talking about it has made me more comfortable with it and myself, and I’m sure the more we raise awareness, the more people who don’t have diabetes understand it, the easier it’ll be for those of us with diabetes. I would urge anyone with diabetes to talk about it as it really does help.