In 2009, Steffi googled her symptoms and she discovered on her own that she was living with Type 1 diabetes. After her diagnosis, she felt very isolated and for her, it took a long time to accept this chronic condition. The diabetes online community helped Steffi to be back on her feet. That’s how the adventure in diabetes advocacy has been started.
In a few sentences, can you present yourself and your activity/ies within the diabetes online community?
My name is Steffi, I’m a 28 year old diabetes advocate, blogger & entrepreneur from Germany. I advocate for people with Type 1 diabetes, share my own experiences and create products that make life with diabetes more colourful & fun!
What made you start your advocacy/educational work in the first place? And what makes you keeping on everyday?
I actually diagnosed myself via Google 10 years ago. I typed in my symptoms, the results were unambiguous and the next day, the doctors made it official. After my diagnosis however, I didn’t google or research diabetes for years. I had a hard time accepting my condition and felt very isolated. Only years later, I found my way to the diabetes online community and realised that I wasn’t not alone after all. Seeing all those people with Type 1 diabetes out there and each of them dealing with it in their own unique way – that’s what inspired me to share my own experiences. It’s what motivates me every day!
One thing you wish someone had told you when you were newly diagnosed? Or that you would tell your younger self?
I wish I had found my way to the diabetes online community earlier and I wish I had known that none of us get it right all the time. After my diagnosis, I was given unrealistic expectations of perfect glucose levels every single day. No wonder that I was struggling, because I was clearly failing! But seeing that everybody, not just me, has bad days gave me a sense of realism and empowered me: doing our best is all we can do and some blood sugar roller coaster rides are just part of the deal. Life has its ups and downs – so does life with Type 1 diabetes. And that’s okay! 😉👍
One thing about Type 1 diabetes you DON’T want to hear anymore?
I don’t want to hear or see any more motivation through fear of complications. Yes, it’s important to educate people and do what we can to minimise risk. But there are other, more positive ways to motivate people with Type 1 diabetes. And more importantly, we need to remove the stigma from diabetes-related complications. I was diagnosed with early stage polyneuropathy last year – that doesn’t mean that I’ve failed and that doesn’t mean that it’s my fault either. Complications can be part of life with diabetes and we should learn to deal with them and talk about them without any shame and blame.
If your diabetes was a real person and you could talk to them once in your life, what would you say?
Go home, you’re drunk.
Your favorite hypo treat·s?
Juice Boxes! 🥤
Your favorite low carb food/snack?
Fav high carb food?
Pasta & Cupcakes! 🍝🧁
Diabetes burnout: what do you think about it? Personal experience? Any advice on how to cope with it?
Yes, I’ve had diabetes burnout and many people experience it throughout their lives with Type 1 diabetes. It’s important to talk more openly about this, especially in diabetes education programs. My advice to anyone struggling with diabetes burnout is to ask for help when you need it. We need to accept that we can’t always give diabetes our full attention. It is just one piece of our lives and we all have limited energy to give. Sometimes it can just be too much! That’s okay, there are ways out of it and better times lie ahead!
If your diabetes was a song?
#BONUS: Let’s talk about travel!
One of my favourite topics is traveling with diabetes! Many people are scared to travel after their diagnosis and I know I was too. My endocrinologist didn’t help – he discouraged me from doing a year abroad and I’ve always regretted listening to him back then. But ever since, I’ve made my own decisions and my own experiences. And I loved every single trip, be it mountain biking in Bolivia, visiting humanitarian projects in rural Uganda, kayaking in Cambodia or eating my way through New York. It may be a lot of extra baggage, but with some preparation, people with diabetes can travel wherever they want. And I for one can’t wait to pack my bags again…
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