{Interview} Myrthe Heida, Founder of girl0ninsulin
Hello everyone!
Happy weekend - boy do I have a treat in store for you!
I first came across Myrthe [aka girl0ninsulin] on Instagram and I LOVE her approach to living with T1D. Her honesty and openness is always so refreshing. She describes herself as ‘positive and real’ and I can attest to that! Myrthe is also a diabetes advocate and public speaker and she wrote her university dissertation on type 1 diabetes and user engagement - but more of that below…
I knew she’d offer some excellent insights into life with type 1 diabetes, so we did an interview together. We discuss diabetes burnout, the Diabetes Online Community and the challenges of being a type 1 diabetic AND a teenager.
As ever, we end with a quick-fire round, my favourite.
If you want to follow Myrthe online [you definitely should] you can check out here blog here and follow her on Instagram here.
Onto the interview!
Hey Myrthe, great to have you on here. Please tell us your T1D journey! What age were you when you were diagnosed / what symptoms did you have?
I was a little 5-year-old when I got diagnosed whit type 1 diabetes. I don’t remember much, except for my mum who started crying when we were in the GP office. After that, we had to rush to the hospital and I didn’t understand why it couldn’t wait a day. I remember thinking: ‘isn’t one doctor a day enough?’.
My parents took me to the GP because my energy level was far below what it used to be, I drank an incredible amount of water every day and I visited the bathroom more often than any other room in the house. It was a scary time. I was afraid of needles, doctors and hospitals. Nowadays, I can be quite friendly with healthcare professionals luckily. Needles are still my biggest fear though!
What do you wish you'd known when you were newly diagnosed?
I wish someone told me that diabetes is about more than counting carbs and checking ‘numbers’. And that it’s OK to not feel OK. No one ever told me about the mental impact of diabetes. Not when I was diagnosed at 5 years old, nor when I was growing up and becoming a teenager. I was constantly fighting with myself and my negative thoughts. It led to a diabetes burnout when I was around 14 years old.
What is the worst thing about T1D?
You can do everything in your power to manage your diabetes and to feel good. Sometimes it still isn’t enough. Diabetes can be incredibly frustrating. Waking up in the middle of the night with a random high blood sugar, the low blood sugar at work that I did not see coming, it can be very difficult. And again: the impact it has on my mental health. When my blood sugars are all over the place, my anxiety gets worse. I also experience more panic attacks when my blood sugars are high for a longer time.
(Curveball) What is the best thing about T1D?
The Diabetes Online Community. I’ve met so many incredible people with diabetes through Instagram. It makes me feel empowered. I gain so much more knowledge than at the endo appointments and I feel way less alone. The community and my diabuddies seriously changed my life! Not only mentally, my A1c has dropped significantly since being active in the community.
What are the main challenges of living with T1D?
I would say building relationships with other people, building a healthy relationship with yourself and the fact that you can always ‘do better’. Like I said, you can do everything you think you can do and still end up with high blood sugars. That makes me feel as if I should’ve done more. Like I could’ve done better. Although I now know how to deal with those feelings, it was really hard during my teenage years.
How do you deal with these challenges?
I talk to a professional about my mental health. Besides that, I changed my mindset. It took me a few years, but blood sugars aren’t ‘bad’ or ‘good’ to me anymore. They’re just the information I need to manage my chronic condition.
Where do you find support/how do you access support?
On Instagram and YouTube. I search for hashtags such as #t1dlookslikeme, #t1d and #diabadass. The amount of support I receive from the Diabetes Online Community [DOC] is absolutely incredible. I also talk to a professional but the DOC is the most valuable to me.
Can you recommend any great podcasts or blogs?
I prefer YouTube videos, to be honest. I love watching Michelle Lord’s videos. For more information about diabetes technology I watch Nerdabetic’s videos.
Have you ever 'hidden' your T1D?
Yes, and for a long time. During high school, I pretended I didn’t have diabetes. Not talking about it and hiding my insulin pump made me feel a little bit more ‘normal’. Although I soon realised that it didn’t help me, I kept on hiding my type 1. I felt horrible and exhausted all the time. It was a very difficult time in my life.
How do you think T1D has affected your relationship with your body?
Immensely! For years I genuinely hated my body. It didn’t do its job properly and that made me upset. It made me unhappy. However, because of that, I was forced to do something about it. I tried to figure out what makes my body feel strong and healthy. For example, I eat plant-based most of the time and I feel great! I realised I have the power to change my relationship with my body. Which has helped me a lot!
How do you think T1D has changed your approach to life and living?
I honestly don’t know what my life would be like if I didn’t have type 1 diabetes. I even started my own business called girl0ninsulin which is all about diabetes. Diabetes has taught me to be strong and positive. Because of my diagnosis, I’ve met so many incredible and inspiring people and I’m lucky to call them my diabuddies now. Although I’d rather be cured, diabetes has made my life the way it is and I’m pretty happy with it!
T1D is classified as a physical condition, but we all know there is an emotional burden too. Could you describe your experiences?
I think type 1 diabetes is as much a mental condition as a physical one. It’s a 24/7 job. And although you give 150%, it’s not always enough. Of course that has a massive impact on your mental health. It’s incredibly important we talk about that. For years I thought I was the only one with mental health struggles and I thought it was my fault. I wasn’t and it isn’t. Diabetes is about more than just numbers [blood sugars, A1c, etc.]
When did you start to work in type 1 diabetes advocacy and what was the reason behind that?
2.5 years ago I thought I had this super creative and unique idea to start an Instagram account about my life with T1D. I wanted to show the world what it’s really like to live with T1D. After only a few hours on Instagram I realised there were SO many diabetes related accounts! That’s the first time I saw diabetes advocacy was a ‘thing’. It was never my goal but I’m happy I get to spread to message and I get to help so many people living with diabetes. It’s also for selfish reasons to be honest; the DOC has helped me and supported me when I needed it.
You wrote your dissertation on type 1 diabetes and user engagement - please tell us more about that!
I did! Finding a topic to write my dissertation about was quite difficult. I soon realised I should write about something I know better than anything: diabetes (in relation to communications, which I studied). I reached out to Roche Diabetes Care and I wrote my dissertation for their blog Leven Met Diabetes (which translates to ‘live with diabetes’). I advised Roche Diabetes Care NL about how they can create more engagement on their website. My advice was to start a bloggers team to write the content on the website. After all, the only people who know what it’s like to live with diabetes, are the people with diabetes themselves! I’m now part of the bloggers team for Leven Met Diabetes.
BONUS quick-fire round:
Omnipod or Medtronic?
Omnipod DASH!
Finger pricks or CGM?
CGM
Juice box or jelly babies?
Juice box! My favourite hypo treatment is apple juice!
Balmy summer nights or crisp wintry mornings?
Balmy summer nights!
Yoga or running?
Running
Meditation or yoga?
Meditation
Porridge or pancakes?
Porridge (with raspberries, soy milk and sunflower seeds!)
Diet Coke or Kombucha?
Diet coke. Always
Novorapid or Fiasp?
Novorapid
London or Paris?
LONDON! I lived in London for a year
Morning bird or night owl?
Night owl, definitely
Nanchos or watermelon? [trick question, I know you love both!]
This is SO difficult. I think it depends on my mood. Right now I crave nachos