Laura Jane lives life to the full. Unaware of any specialist emotional support from her diabetes team and not finding the right support through a work counselling scheme, she turned to us and the wider online diabetes community.
Laura Jane Bull
Living with Type 1 diabetes since 2015
"There should be a formal conversation about where people can find support should they need it. All of the connections I’ve made are due to me being proactive but there doesn’t seem to be any provision for people who wouldn’t think to reach out."
Laura's journey with diabetes
- Diagnosed at the age of 23.
- Sought help when struggling from a work counselling service as wasn’t aware of any from her diabetes team.
- Found the support she needed after joining Instagram and Diabetes UK’s Young Adults Panel.
- Her new friends gave her tips on using diabetes tech to help her live the life she wants.
- Diagnosed with a second autoimmune condition called interstitial cystitis (IC) in 2018.
I lead a busy lifestyle and I'm rarely at home. In your 20s you're supposed to be free and open to all the experiences life can offer you. But balancing a social life, career and looking after my diabetes is a tricky balance. I stay active and count carbs meticulously.
I've always found the diabetes nurses and female staff supportive and I feel able to chat things through with them. My consultant is male and the time I have with him is more functional. But I wasn’t aware of any specialist emotional support.
Reaching out for help
When things got too much for me after the loss of two close family members I turned to an independent counselling service at work. I’d spoken about how I was struggling and I was advised my problems controlling my diabetes seemed to be at the root of it. I was told I should wait to see whether my nurses would give me an insulin pump and then come back to them if I still felt I needed some help from a therapist.
About a week later the nurses said they could refer me to speak to someone if I'd like, and I declined. I thought the conversation might be the same and that the physical side of my diabetes might be a reason for delaying any support.
"I decided that I didn’t want to open up to a stranger like that again if the outcome would be the same."
The nurses didn’t outline any options that might be available. But to be honest, just speaking to them about it was a weight off my chest as I don’t really have much contact with my healthcare team unless there is a problem I can’t resolve myself. They listened to me and talked my issues through and did actually make me feel better about my situation.
What has helped me the most
I first reached out to the diabetic community on Instagram in May 2017, around the same time I applied for the Diabetes UK young adults panel. I connected with so many people.
"I found far greater emotional support in the diabetic online community and their advice and support is invaluable."
From there I learnt more about different ways of treating diabetes. I found that just because your doctor, a person who doesn't have this disease, taught you how to do something, that doesn't mean that it's the best way for you to treat your diabetes.
"Everyone is different, and needs different things to help them cope and live the life they'd like. Peer support gives me everyday advice on how to deal with the situations diabetes throws up."
I learnt about using a Dexcom (continuous glucose monitor) and that I could get over my fear of having a hypo on a packed commuter tube using that nifty little machine. When you’re stuck on a tube and can feel your blood sugars dropping, but there’s no room to get out a blood monitor and test, it’s so much easier to have your blood available on a app or smartwatch.
I learnt that 17 Skittles are good for hypos to avoid overtreating, and that you can get Frio bags to keep insulin cold or needle clippers so you don't have to take a sharps bin on holiday. Those are such tiny little things that have a huge impact, but your medical support system don't have the time to tell you.
One day I’d had an Indian takeaway with friends. I didn't inject until 45 minutes after we started eating, and I did two staggered injections to compensate for the amount of fat in the food. Despite this, I had a hypo and exhausted all the sugar I had on me. Luckily by this point I had a group of diabetic friends on a WhatsApp group. And while my normal friends were debating calling an ambulance, my diabetics told me to get orange juice.
"So at 1.9mmol, unable to keep my sugars up or think straight, my diabetic friends saved my life through the power of the internet."
My diabetic friends also encouraged me to fight for an insulin pump which I knew would be hard. I was terrified of hypos, incredibly sensitive to insulin and running myself deliberately high to avoid hypos, because dosing myself was so awkward due to the sensitivity. My friend Tilly immediately became my cheerleader – reminding me that I didn’t have to suffer like that, and that diabetes isn’t supposed to be like that. Without her I’d still have been restricting carbs in order to keep control, shying away from things I felt I couldn’t do with the restrictions I’d placed on myself to have that control and not enjoying the kind of life I want and choose to lead.
These days I usually deal with physical problems pretty well, but if I've had a particularly busy week and things haven't gone to plan then it's harder. Unexpected hypos in the supermarket or gym, or a lot of pain on a day where I felt I'd been good in avoiding foods that trigger my IC, can get to me.
"Every time a physical problem arises, my immediate reaction is emotional. For me, it's almost mourning the carefree life I had."
When this happens, I usually go into self-care over drive. If too many hypos are throwing me off, I'll hole up on the sofa with blankets and some trashy TV to make me feel better. If high blood sugars are the problem then I'll go to my yoga mat and find some head space while I'm bringing my sugars down.
"I can usually tell when I'm in this vulnerable state, and feeling more run down or just struggling. I know that in those times slowing down is best for me so I can stop and deal with the problem by fixing it. Then I can figure out the why."
There's no right answer with diabetes, or a chronic pain disease, but if you can figure out what has caused a problem or issue, then at least you can build a life that navigates around those obstacles.
Support from Diabetes UK
"I’ve built my own support network through Diabetes UK and the diabetes online community. But there should be a dedicated place for diabetics to seek this support as well."
Diabetes UK has encouraged me to talk about my diabetes and make it a part of everyday conversation. It’s linked me to so many diabetic peers that have helped me process this huge life change and embrace diabetes as a power to be used for good.