{Interview} Alex Durussel-Baker, Creator of Diabetes by Design
T1D Inspiring Interview Series: Alex
Meet Alex Durussel-Baker, 36-year-old creator and designer living in Edinburgh with her husband Jerome, 2-year-old son Rowan, and fluffy dog Bacchus (banging name). She runs a design studio called Korero Studio and is the founder of Diabetes By Design, a diabetes education and awareness platform that provides mental and emotional support for people living with and alongside type 1 diabetes.
The questions
Tell us your type 1 journey - what age were you at diagnosis, and what was the experience like?
I was diagnosed at the age of 30 while on a flight to New York City. It was pretty dramatic, especially as my doctor phoned while we were taxiing down the runway and when I hung up I was then faced with 9 hours of no internet access to read about what the hell type 1 diabetes was. Upon landing in New York I was hospitalised for 3 days. It remains the most surreal experience of my life.
In hindsight, is there anything you wish you'd known at diagnosis that you weren't aware of that would've been helpful to know?
I knew so little about type 1 diabetes that I had to do a lot of unlearning. I thought diabetes was something you got when you were old or for eating too much sugar. I had no idea. As one of the most prevalent illnesses in the world, I wish we were better educated as to what diabetes is and its different types.
In your experience, what is/are the best thing(s) about T1D?
Meeting other people with the condition. Building awareness and empathy for the millions of people living with a visible or invisible disability and as a result being a better human. Being able to judge carb content at a distance.
In your experience, what are the main challenges of living with type 1?
I think the biggest struggle is the lack of awareness about the condition and the isolation that creates for us and our loved ones (or sometimes with our loved ones!). Being an invisible illness, no one sees the millions of decisions we have to take just to go about our day. All that brain power could be spent elsewhere! I struggle with brain fog when I am high which really zaps my creative energy.
What, if anything, do you find helps in dealing with these challenges?
Staying curious about my condition, educating myself about it and being gentle with myself when it goes pear-shaped. The last bit is the hardest because it’s so easy to blame ourselves when actually mimicking a pancreas is ridiculously hard and we don’t get a break.
Where do you find support/how do you access support?
In speaking with others who have the condition, unloading, sharing tips and tricks and laughing about this crazy condition and the situations it puts us in.
Can you recommend any great resources (podcasts, books, accounts or blogs)?
@DiabetesByDesign 😛 I’m a big fan of Jen Grieves’s Type 1 on 1 podcast, the book Blind Spots and Landmines was helpful early on in diagnosis to get back into an active lifestyle and later Pregnancy with Type 1 Diabetes was an education in truly understanding the magic of pre-bolusing, that book alone brought my HbA1c down by 2 points. Recently I have been attending some of the #dedoc° online events which are a great way to find out what is happening in this space!
How do you think type 1 has affected your relationship with your body?
It’s changed it for sure, I had to learn to trust it again as I felt it had let me down. Beyond that, simple things like “am I really hungry or am I just going low?”. We have to learn to live with this disconnect because ultimately we are keeping ourselves alive artificially.
How do you think type 1 has changed your approach to life and living?
In my first year of diagnosis, I remember being on a client call and my CGM alarm going off because I was feeling stressed by the call. This was a defining moment when I understood that stress was literally killing us and that I now had the power to decide what was worth stressing about. Thanks to T1D, I value my time more and am careful where I spend my finite energy.
Type 1 is classified as a physical condition, but we all know there is an emotional burden too. Could you describe your experiences?
This question is the mantra of Diabetes By Design. 1 in 4 adults in the UK experience what is known as diabetes burnout, where they become so overwhelmed by the burden and unrelentlessness of managing their diabetes that they stop. This is what leads to the drastic complications of the condition. Some people say that tech will solve this but my answer to this is that if someone is so burnt out that they can’t get out of bed it’s likely they won’t be wearing a pump or CGM. Right, I’ll get off my soapbox.
Personally, I was diagnosed with clinical depression 18 months after my diagnosis and was lucky to access clinical support, many people are still waiting. “Fun fact”, people with diabetes are twice as likely to develop depression than the general population.
How and when did you create your diabetes-inspired design studio Diabetes by Design?
Diabetes By Design was my response to a depressive episode I had in my second year after diagnosis. Frustrated at myself and at the world's misinformation, I set myself the task to create a print and mini essay a day about one aspect of type 1 diabetes. My goals was to make the invisible tangible and to trick people into learning (or unlearning) what they knew about diabetes. This helped me in so many ways but not least in connecting with loved one and strangers through seeing type 1 diabetes differently.
Since starting sharing the prints and essays on Instagram back in 2019, I’ve had three exhibitions, sold prints throughout the world and am currently developing a toolkit to help cut through the overwhelm of learning about Type 1 Diabetes, called the Companion Cards. You can read more about these on my website.
Which print/piece of art/design are you most proud of?
A community favourite is the Rage Bolus print but my two favourites are the Mondrian “Balance” one because it represents what I strive for daily and I am also proud of my newest piece “Interdependent” which is the world map shaped into a blood drop. It’s a more political piece about how we are all interconnected and dependent on each other to survive.
You recently held your widely acclaimed Diabetes by Design festival in Edinburgh, well done! Are there any plans for future exhibitions or events?
Thank you, it was a really fun week! The next big milestone is the Companion Cards as I am presenting them at DiabetesMine in San Diego in November. But I love bringing the diabetes community together so watch this space!