For Charlotte, her Type 1 diabetes is another thing she wrestles with on a daily basis. The psychological care she receives, alongside her active lifestyle, help support her through the challenges that living with diabetes can bring.
Living with Type 1 diabetes since the age of 3
“I’ve been playing this diabetes game for a while, so I don’t get surprised by much, physically or emotionally. But asking for help doesn’t come easily.”
Charlotte’s journey with diabetes
- Diagnosed 27 years ago.
- Changed from multiple daily injections to an insulin pump six years ago.
- Started getting involved in activities for young people with Diabetes UK soon after university which was a ‘turning point’.
- Sports is an important part of managing her diabetes.
- Feels well supported by her current diabetes team.
Living with diabetes
I work at a national health charity as a Patient Involvement Manager. Most of my spare time involves playing some kind of sport or doing various activities including softball, strongman training and CrossFit. Three years ago, I started training to be a professional wrestler. Unfortunately, a seizure at the end of last year (due to low blood glucose at night) and some issues with my joints have forced me to take a bit of a break, but my heart still belongs in a wrestling ring.
Between my trusted insulin pump and Dexcom CGM, they manage to keep me safe and healthy. They’re a vital part of my diabetes management, particularly around training and physical activity. Sport and exercise is also a huge component of my diabetes management – physically and mentally.
Throwing around grown men or flipping 100kg tyres come easy to me, but the fact that my diabetes can make me vulnerable at any given time is infuriating.
I don’t remember diagnosis and much of my coping mechanisms were learnt ‘on the job’. Having been diagnosed in 1992 when psychological support wasn’t even a consideration for those living with Type 1 diabetes, I internalised so much of the emotional impact.
"Over the last 5 to 10 years I’ve learned to talk about it a bit more openly particularly with others with diabetes. It’s difficult as you almost have to let go of your resilient guard in order to address the underlying issues."
Type 1 diabetes is hard. It’s relentless and has zero respect for any other aspects of life. One of the biggest challenges for me is around all of the things you have to remember when living with Type 1 diabetes. The number of times my insulin pump cannula has sweated off in the gym and I didn’t have a spare in my bag is quite scary. My brain is constantly full with stuff I need to remember for my diabetes, which makes general adulting even more challenging!
What has helped the most?
Fortunately, psychological care is integrated throughout the whole of my local diabetes service. All members of the team (including consultants, DSNs, dieticians) have been trained in identifying those at risk of diabetes distress. If they feel that you need more support, they can refer you to the clinical psychologist (or you can ask to be referred).
My diabetes team use tools such as the Type 1 Consultation Tool questionnaire at every appointment to understand who might be at higher risk of diabetes distress.
"I’ve been playing this diabetes game for a while, so I don’t get surprised by much (physically or emotionally). But asking for help doesn’t come easily."
However, after switching to a new pump which didn’t work at all for me, I told my DSN that I couldn’t carry on as I was on the brink of tears after 8 weeks of daily pump stress. She took this seriously and actioned another pump to try right away. My biggest reservations would be if I admitted to struggling and there was nothing practical done – talking is all well and good but actions speak louder.
Another example is the sleep anxiety that I struggled with after having a seizure during the night. I contacted my DSN and consultant, who then sent me some resources from the clinical psychologist. (A couple that work well for me are falling asleep to white noise in the background, and mindful breathing during the day - the Breathe app on Apple Watch is great for guided breathing).
"It’s this multidisciplinary approach that I value so much. The fact that there is a psychologist as part of the service, means ad-hoc support can be given when needed."
Support for parents
My parents shouldered much of the burden of societal stigma when I was first diagnosed.
"From accusations of neglect to uneducated comments around feeding their child too many sweets, being able to talk through the guilt that they felt would’ve prepared more for the journey."
Likewise, the fear and worry that my mum had almost on a daily basis while I was a rebellious teen, drinking too much and forgetting my injections, caused her many sleepless nights. Fortunately she has great parenting skills and had more faith in me than I had in myself!
Diabetes UK and me
One of the biggest turning points for me was getting involved with Diabetes UK, particularly the Young Person’s Programme in Wales, shortly after finishing university. Meeting others to share experiences and journeys with and, more importantly, making life-long friends.
From that, I’ve gone on to be involved with the Grants Advisory Panel, the Council of People Living with Diabetes and the Young Adults Panel at Diabetes UK. These activities all give me a forum to help shape future diabetes services, but they also give me so much hope. We’re constantly working to make the future better for people with diabetes.